Life without a stomach, with Karissa Eifert

Episode Transcript

Ariel: Hi, there. And welcome back to another episode of the “Colon Health Podcast.” I’m your host, Ariel Bridges. And today we have Karissa Eifert with us. Hey, Karissa.

Karissa: Hi.

Ariel: Thank you so much for being here. Just to start out, can you please share a bit about what you do with the audience?

Karissa: Yeah. I am an interior designer in South Dakota of all places. And also, I do a lot of creative work. So, I’ve been an interior designer since 2006 but I also do some marketing, consulting, and working with some different advertising and marketing agencies and small businesses within my community. So, that’s how I stay busy, that’s how I keep my time. And as we just discussed, I just got a new puppy. So, he’s keeping me quite busy too.

Ariel: Yes, we love puppies. So cute but very demanding.

Karissa: Definitely a handful, for sure.

Ariel: So, for those of you that are listening, you may recognize that Karissa’s background isn’t exactly, at least career-wise, at least exactly what we usually see when we’re interviewing people for the podcast. Which brings me to my second question, which I always ask our guests because I think that it’s really important for our listeners to be able to relate to and understand other people that may be in similar places on their own gut health journey. So, would you mind sharing a bit about your gut health journey? And what brought you to where you are today? I’m so curious to hear about your entire journey. I realize it might be somewhat lengthy, which is okay, but can you share your story with us?

Karissa: Yeah. So, in 2019, I was diagnosed with a mutation on my CDH1 gene. It was a surprise to find out, it was kind of a fluke that I even got that information. My gynecologist was just proactive and wanted me to do some genetic testing, actually, for something else. She wanted me to test for BRCA. And they did a full panel and that came back instead. And that sort of started this journey that I’ve been on now for the past three years, of ultimately having my stomach removed to eliminate the risk of hereditary diffuse gastric cancer. So it’s kind of like it was a crazy story and I realize I’m, like, skipping to the punch a little bit, but I needed to get that part out so I can go back and kind of explain where it really started, which is in 2015 when my mom was diagnosed with hereditary diffuse gastric cancer. At the time, we didn’t know that there was any genetic component to that. And in fact, her oncologist and her surgeon both said, “You know, this is a very rare type of cancer, and it’s not something that you need to be concerned about, this is a fluke.” There was a malfunction in her body. This is something that’s much more common in older people, people in their 80s, not people in their 50s.

So, my family, we’ve just sort of like lived blissfully ignorant for three years, not really knowing that that was a risk that I needed to be concerned about or, like, my sister needed to maybe potentially be concerned about. And my mom passed away from that cancer in the end of 2015. It was a very short battle. She was diagnosed in April and passed away right before Christmas. And so, that year was kind of fast and furious. And like I said, from essentially 2016 to 2019, I didn’t know anything about it, I didn’t really think about it much other than in just the normal process of grieving my mom’s death. So, to get those results, it was a total shock to me, but it’s something I am so incredibly grateful for to this day because I would have never known otherwise, I didn’t know that that was something I needed to look for.

So, with the CDH1 mutation, you have a really dramatically increased risk of stomach cancer and hereditary diffuse gastric cancer specifically, which doesn’t act like a normal cancer in the sense that it develops a tumor that is very easy to spot. It’s more like a spiderweb or like lace within the lining of your stomach. And so most often people are not diagnosed with hereditary diffuse gastric cancer or diffuse gastric cancer until they are terminal until they’re stage four because they’re not able to catch it until it manifests in a different way. So, until it has spread somewhere else and it’s causing other complications. A lot of times the symptoms of diffuse gastric cancer are things like they present themselves with things like heartburn, indigestion, quick fullness. So eating and getting full really quickly or not having much of an appetite at all. And obviously, those are also really common symptoms for a lot of other things. And so it’s not often the first thing that a physician is gonna jump to is going, “Well, you might have cancer, and you might have one that’s hard for us to detect or see on, you know, a PET scan or a CT plan or something like that.”

So, I’m so grateful that I had that information because I may not have been given the opportunity to still be here otherwise in any number of years. And so, that’s like the really, really short version of that story. I know that’s like a lot of information that I just threw at you at once. I don’t know if there’s anything you’d like me to kind of touch on specifically related to that.

Ariel: That was incredible. And it’s March, I’m not sure when the audience is listening to this. It’s March right now. So we have been telling people about colorectal cancer awareness month and gastric cancer is obviously different from that. But we’ve been really trying to hammer home the importance of screening and making sure that you are getting tested, especially if someone in your family has had some sort of similar condition. And this is one of those cases where, holy cow, it’s so great that your gynecologist suggested this to you.

Karissa: Right. Yeah. It was, and like I said it was a total fluke, that was not something that she necessarily was expecting to come back. There were some other symptomatic things in my family that made her think that maybe there was a risk for ovarian cancer potentially, so she wanted to catch the BRCA. And the CDH1 mutation is actually quite rare. There’s not very many of us. And so in my community, I do live in a city, but it’s a relatively small city. Nobody here even knew about the genetic mutation or kind of really how to handle it. So, my journey then led me to seeing specialists in other parts of the country and being involved in a study and some different things like that. And so, obviously super grateful for all of those opportunities as well. But gastric cancer itself is the fifth leading cause I think of cancer-related deaths in the world. But it’s actually not super common anymore in countries like the United States, where we do have things like good prevention, good screening, better food practices now. You know, there’s a lot of things that cause stomach cancer before that we are thankfully not really needing to be on as much anymore. We now have, like, refrigeration and we’re not preserving foods in the same way anymore and we’re not putting as many toxins in our bodies. And so there are many types of stomach cancer.

Diffuse gastric cancer is one of the rarest, less than 1% of the population is going to be impacted by diffuse gastric cancer. However, if you have this genetic mutation that I have your risk jumps to, you know, between like 70% and 85%. And so, it’s much less of a like an if and more of a when it might present itself. So, actually the average age of onset for hereditary diffuse gastric cancer in CDH1 patient is about 38 years old. And so, my mom being in her mid-50s was actually a “older patient” to have kind of been dealing with it. Obviously, there’s a range, so there are people much older than her that have been diagnosed and people much, much younger, unfortunately, than me that have been diagnosed as well. So, I did have my stomach removed in 2019, end of 2019. And on the pathology, when we got all the results back and everything I did already have signet ring cell carcinoma in my stomach, it was just sitting in wait, basically. So I was staged, technically stage 1A since it had not spread, right? It was just a cluster of cells at that point, but it was already there. And so it’s just a matter of when at that point, or if it’s going to manifest into something bigger. It’s just so hard to tell.

I’m involved in a study at the National Institute of Health that is studying this particular genetic mutation and this type of stomach cancer, specifically to determine that, like, are those cells just inherently that they just exist in CDH1 patient or do they manifest over time? Is there a way to stop them from spreading? I’m super grateful to be involved in that research as well and to be able to help kind of provide my time, my tissue, my everything to see if they can come up with some better solutions in the future so that hopefully other people don’t have to have a total gastrectomy as their only option for kind of getting ahead of this.

Ariel: Yes. I feel like that had to have been such a big decision for you. I know I mean, 75% to 80% it seems like somewhat of a no-brainer. But that still is a very big procedure to have done and must have provided you with at least some sort of relief, I imagined to see, “Oh, my goodness, like, I already had those cells forming in my stomach.”

Karissa: Yeah. It definitely helped make the recovery, the difficulty of recovery feel a little bit more worth it, if you will. Not that you want results like that. But I had some complications with my surgery. Nothing major, but I was in the hospital for about a month. So my recovery was really slow going first. So, to get that information, it did help get me through those early days where it was like, “Okay, this was worth it, this was not offered nothing.” Like, when you’re in those first early days of recovering from any kind of surgery, anything is so hard, and you kind of question why you would think to do something like that. Yeah. It did help me feel like that was a really justified choice. And I’m grateful that I made that choice.

Ariel: Can we just back up a little bit and share what it even means to have your stomach removed? I’m sure most of our audience is like, “How is she eating? What does her life look like?”

Karissa: Yeah. So, I had my surgery in the end of 2019, it was November 2019. So, I’m about, not quite two and a half years out from surgery. So, at this point, for me, life is pretty what I would consider normal, it’s not normal like it was before but it’s a new version of normal, I’ve got a good routine. But it is obviously dramatically different than it was living with a stomach. So, when they removed my stomach, they also removed a bit of my esophagus and small intestine as well where the stomach connects because any risk of any stomach cell in your body gives you that risk of this particular type of cancer. So, they take a little bit from each end as well, and then connected my esophagus to my small intestine. So, instead of having a pouch of the stomach like everybody else does, I have just a tube. So, it’s just like kind of a straight shock, at this point, just esophagus straight to small intestine.

And the thing about your stomach is that I didn’t know before surgery is it is not necessarily an essential organ. Obviously, it’s good to have it. I would much prefer to have my stomach, let me make that very clear than I would to live without it. However, your stomach acts as a holding tank. So, it acts as a holding tank, it helps grind up your food and process it a little bit more, and prepare it for your small intestine. But your small intestine is where all of your nutrients are absorbed and everything like that. So, it hasn’t impacted…I mean, after surgery, obviously, you are a little bit, like, malnourished for a while as your body is recovering from the shock and learning how to process things differently. But I essentially eat like a gastric bypass patient at this point. So, I eat several small meals a day because I, as you might imagine, with just a tube, I get full very fast, but then I’m hungry again in about an hour and a half. So, I just eat often and everything else functions pretty much essentially the same. So, I’m grateful for that. Like I said, I am far enough out now though that my body has adjusted to what this new function looks like. And it wasn’t always smooth sailing at the beginning but now I feel like I’ve got a pretty good routine of how to go day-to-day.

Ariel: That’s so interesting. It’s something that you don’t really think about. I feel like, “Yeah, we all just eat and we’re like, okay, yep, that goes into my stomach. And then when it’s ready, I go to the bathroom, and maybe later I’m hungry and eat more.” But having to be very conscious about how you consume food and how your body needs energy is like a whole new thing to learn.

Karissa: Yeah. And obviously, nutrition-wise, things have changed too, because I can’t get as much in anymore at any one given time, the priorities of what I eat has changed. So, every meal has protein, and every meal I try to make it as calorically dense as possible. I don’t need to focus on that quite as much now anymore as I did right after surgery because, I mean, after surgery there might have been…there were days where, like, four bites of food was a meal for me. Over time, now your esophagus and your intestines really aren’t like meant to stretch the way your stomach does, but they do create a little more space over time. So I can eat more now. I don’t get as concerned with making things super calorically dense anymore but I always do focus on protein first. So, that means I don’t eat as many things like vegetables anymore. I do still eat them and I eat them every day but rather than starting your meal with your vegetables and making sure you get those in and then working your way around your plate the way a nutritionist for an average person might suggest, I go the opposite. And then I’ll start with my protein. And then it’s like, if there’s room, I have a few bites of veggies type of a thing.

That’s a little bit of an adjustment thinking about, like, wrapping your mind around what is “healthy” because it’s all relative to each person, obviously. So that was a bit of a change. I don’t handle sugar as well and anymore because that’s another thing that your stomach does, as a holding tank, it doesn’t, if you were to eat something that’s super high in sugar, your stomach is still holding all of it, and only releasing a little bit of it at a time into your small intestines where if I was to eat a piece of birthday cake, or whatever, for example, that all goes into my small intestines at once. And that causes an insulin spike and then a drop, and blood sugar crashes and kind of reactive hypoglycemia, it’s called dumping syndrome, actually, and it can wreak some havoc on your body. So, it’s not even necessarily high sugar foods, but things like that are really high in carbs, too, that your body then processes to sugar. So, there is definitely a learning curve about what I can eat and how much, like, what the limits are of things, what my body will tolerate and what it won’t. So, it’s a lot of trial and error over those first couple of years just figuring it out, see what works. Sometimes what worked one day doesn’t work the next or vice versa. So, just patients on the road as generally try to reintroduce everything. And at this point, there’s not really anything that I cannot eat. I just try to be mindful of the amount of things I eat.

Ariel: So so interesting. Can you give an example of maybe what one or a few of your meals might look like in a day?

Karissa: Yeah. So, I could kind of run me through really quick what I ate yesterday if that would be helpful.

Ariel: Oh, yeah.

Karissa: It’s only 10 a.m. here so I’ll just go yesterday because I haven’t gotten very far today. I start my day with coffee. And I have just always worked best for me to use my coffee as my first real plug of calories and protein for the day. Over time it’s gotten a little bit better. But especially that first year and a half, I had no appetite first thing in the day so I could get coffee down, so I just always start there. So, I have coffee with collagen and cream, heavy cream in it first thing in the morning to get some calories into my body and to also get some protein in. I know other people make protein shakes in the morning. I have a hard time tolerating those. I don’t enjoy the artificial sweetener flavors in things like protein drinks. So, I have stayed away from those but they work really, really well for a lot of other people. A couple of hours after that I’d been working for a few hours in my office, I had a piece of toast with peanut butter on it. And then for lunch a little bit later, I had a bowl of soup with sausage and tortellini and some veggies in it. Or not really a bowl, I should say a cup, smaller portion, like a cup of soup, like, that I had made leftovers so I reheated that.

A little bit later in the afternoon, I make as a short cut chicken salad that I make and just have in my refrigerator where I take shredded chicken and mix it with guacamole and some different spices. And so that’s obviously high in protein, high in fat, so good calories, and it’s a good sustaining kind of meal for me. And so I would eat a little bit of that souped-up with some tortilla chips. Last night for dinner, I went to my sister and my brother-in-law’s house. He’s Cuban, he made us Cuban sandwiches so I had a half of a Cuban there. And I think a piece of Easter candy to wrap up the evening. So, a typical day is about like that. I eat about five or six different times throughout the day as just smaller portions. So, I eat the same type of foods everybody else is eating, I just eat smaller amounts of it.

Ariel: Yeah. I was gonna say that sounds like a pretty normal day’s worth of food. But yes, I imagine it’s much smaller portions.

Karissa: Yeah. And at the beginning, I was having such difficulty getting food in, but overtime, every so often I do work with a dietitian in the study that I’m involved in. And every so often I would track a day of calories and protein just to see if I was on track. And you’d be surprised how much you can get in in a day if you’re just eating enough over time. There was a point in time that I struggled to get to like 1,500 calories in a day. And now I can typically get closer to, like, 2,000 and so I’m able to maintain my weight now too. Obviously, I had a significant weight loss after surgery and that was a concern was, like, stopping that at some point. And I’m able to maintain my weight now and I have better energy now, it’s all much more sustained. And that’s why I’ve relaxed on trying to figure out quantities and calories anymore because as long as I feel good and I have energy to get through my day, I know that I’m probably on track

Ariel: That’s amazing. And it must feel so good to have made it to this point after such a long journey.

Karissa: Yes. It definitely does feel good to feel, like I said, much more normal, being able to do activities. I live in an area with lots of outdoor activities. And so, just being able to get out and hike and do those kinds of things again, that first year after surgery, it was really really difficult for me to do any of that. I would just wipe out really early, I would get like shaky. I also was having a hard time, again, because of my recovery with my complications from my surgery, I was just having a hard time with not only getting food in but even like liquids of any kind. So, I would be kind of dehydrated. And it was hard for me to do much of anything other than sit for a while it felt like. And so for a long time, I wondered if I was going to be able to do the things that I like to do still. And at some point, it just gradually all came back. And so by this past summer, when I was about a year and a half out, it was totally different. And I was able to go on hikes in July and not struggle. As long as I pack snacks and I pack something to drink, I’m fine. So that’s a little bit different, I am now officially the hiker that always has a backpack on, even if it’s [inaudible 00:21:15] because I just have to come with all of my snacks, all of my snacks, all of my drink options, all of that. I always have snacks in my purse, in my car. I’m just like, needed, I’ve probably got it on me somewhere.

Ariel: I love it. I’m like that and I still have my stomach.

Karissa: Yeah. I mean, it’s a good tactic, you really should. I mean, it’s good for everybody to keep their blood sugar from dropping, honestly.

Ariel: Yeah. I’m always pro snacks. It’s always nice to have a sack around.

Karissa: Exactly.

Ariel: You’ve had such a long journey, and you mentioned earlier how your condition is so rare. If we happen to have anyone who’s listening who may also have that CDH1 mutation or might be going through something similar, what advice would you give to someone who may be getting surgery soon or just period going through this process?

Karissa: Yeah. The first thing I would say if you’ve recently been diagnosed with a CDH1 mutation and you’re not sure where to start, first and foremost, take a deep breath. Because it’s a lot of information. I mean, I had a phone call with a genetic counselor and within a 20-minute phone call, I found out that I had a risk of…at that point in time, the numbers have come down a little bit but at that point in time, I think it was 83% chance risk of cancer in women of stomach cancer, and 60% chance risk of lobular breast cancer. So the recommendation was a total gastrectomy. And, I mean, she just gave me all this information in one…it’s always a lot, it’s a lot to take in at one point in time over a phone call. So, it feels very urgent and it is to some degree, I mean, you wanna be mindful and you want to at least be aware of what is going on. So, whether you decide to go the route of surveillance and do annual or biannual endoscopy, which is an option, or if you choose to get your stomach removed, knowledge is power. And even though it feels scary at first, I think it’s better to know what you’re up against than it is to not know.

And so I know that a lot of people, I’m involved in a couple of different online groups and CDH1 patients, it’s really active community of us on Instagram that you can follow different hashtags over there if it’s something that you are relatively new to. And you can find a lot of us sharing examples of us living our very normal lives. There are marathon runners, there are people who mountain bike, there are people who are personal trainers. So people live very active lives still after this. And that was such a huge comfort to me being able to find these people on the other side of the surgery and go, “Okay, this is not a life sentence to a different way of living necessarily.” A lot of them are around my age too, like there’s a lot of people in their 20s, 30s, and 40s are the people who get this surgery done because of that average age of onset. So, it’s really encouraging to see that, there’s also a really active group on Facebook for CDH1 mutation patients. There’s also a lot of good communities for people who have had total or partial gastrectomy online. There’s a lot of reasons, and I didn’t know until I became a part of this community, all of the reasons that people may have a partial or total gastrectomy. Not always cancer-related. There’s a lot of reasons that people choose or need to do that.

So, again, you see a lot of people at a lot of different ages then living totally healthy, happy lives. Women who have had gone on to have healthy pregnancies and healthy babies after having their stomach removed. And you wouldn’t think offhand that something like that is possible because you wouldn’t think that they’d be able to get enough nutrients in but it’s totally possible. And people are doing it all over the place. So if you’ve just gotten this news, I just wanna share that information because it really felt to me that day like my world had kind of been turned upside down. And so, just knowing that there are people out there that are doing it and are living life, just know that and then know that you’ll be on the other side of that too, whichever way you choose. I have friends in this community that have opted to get the surgery the same way I did. And I have others who maybe the cancer risk wasn’t as high in their family and so they’re opting to do surveillance. And so, they do endoscopy use once or twice a year instead, and are watching for those cells to show up. And there is no right or wrong way to approach it, it’s whatever you’re most comfortable with.

And some people are doing it based on their age. I have a friend who is planning to do surveillance until he turns 30 and then he’s going to do the total gastrectomy. But because he is still fairly young, he opted to do that for a few years instead. I was 34 when I was diagnosed and so I felt a little more urgency, I think of that average age of onset creeping up on me than he did. So it’s a totally individual decision. It’s also a big decision. And so, unfortunately, there were people in my life that were not supportive of this decision, they thought it was a little bit rash.

And so, I would just remind people of that then too that you know your body best, you know your life best, so you need to be your own best advocate in this situation. Don’t let anybody talk you into or out of something you’re not comfortable doing until you’re comfortable doing it. So, I knew after watching my mom struggle and die of this cancer and watching her really suffer in hospice, it’s a really tough…I mean, nobody wants to watch anybody die. But this was exceptionally hard. I mean, it was like watching her waste away in a bed with a tube down her nose, just constantly draining bile out of her stomach. And it was traumatic to me, and I knew watching that, I said, “If I have the option to not do that, I’m not doing that,” you know. And so for me, nothing anybody said could change my mind about whether or not this is too rash of a decision. So, be your own best advocate.

The third thing I would say is do some research online, there are a handful of different places in the United States specifically. I don’t know how big your audience is, but there’s also places worldwide that are studying the CDH1 mutation or specialize in it. Mayo Clinic is one. There is I think Sloan Kettering in New York, the National Institute of Health is in Maryland and that’s the study I’m involved in. But there’s five or so really good facilities within the country that have doctors that are aware of what this mutation looks like, aware of how it behaves, and are familiar with treating patients with it. And I would really strongly recommend that you seek out one of those facilities for care rather than just doing something locally. Because your endoscopy need to be done differently than a typical endoscopy. There’s two different methods, there’s one called the Cambridge method, and one called the Bethesda method, and both of them actually collect dozens of biopsy samples, I think, between 80 and 100 biopsy samples of your stomach, rather than the typical 1 to 5 that you would get on a typical endoscopy. So you really wanna see one of those gastroenterologists that is familiar with CDH1, hereditary diffuse gastric cancer, knows what they’re looking for, and knows the spots that they need to be taking those biopsies from.

So, I know it feels really overwhelming to think that you have to travel. Again, I live in South Dakota and I fly all the way out to D.C. for all of my follow-up visits. It’s worth it to me to know that I’m working with a doctor who this is all his focus is, is on patients with this particular genetic mutation and this particular type of stomach cancer. So, just take a deep breath, take your time, and then do some research. Reach out to other people. Like I said, these communities, we’re really active online, and we really wanna help each other. That’s why we all have an online presence. That’s why there’s a number of us who have created like blogs or YouTube pages or different things because we want other people like us to be able to find us because it was hard for us to find our little community. We wanna make it easier for the other people who were maybe just newly diagnosed to find us.

Ariel: That was so amazing. Thank you so much for sharing all of that information. It’s so helpful, so empowering, and I feel like really does help people just be like, “Oh, okay, well, this a lot but I can handle this. There’s a community of people who are willing and wanting to help me and I’m not alone in this very, very big life thing that’s happening to me.”

Karissa: Right. Yes, absolutely. And I’m so grateful. I’m not super active personally, necessarily on social media, and not like…I don’t post a lot all of the time, but I’m on it every day answering questions in DMs of people who have found me because of hashtags. And so, I think about that all the time. You know, there’s a lot of negative talk about social media. But without social media, I would not have the support system for this particular aspect of my life that I have right now. And I talk to people from all over the world. I talk to people in England, and the Czech Republic, and New Zealand, and Australia, and people in my neighboring states also. I mean, it’s rare. So I don’t know anybody else within my local community who I can go and talk to about these things. And so, it’s amazing that we have this resource to do that now, like, the social media gives us the ability to do that.

Ariel: Yes. Social media can be used for good.

Karissa: It can. It can be used for good. It can be a time suck too, but it can be used for good.

Ariel: Right. Well, I wanted to ask if there’s anything else that you wanted to share with our audience before we go.

Karissa: I’m always open to talk to anybody who has questions. So, if anybody is on this road and is concerned, or curious, or wants a way to find themselves into these other communities, and maybe they’re having a hard time with it, they can follow me on Instagram, at reverierising.com. That’s also the name of my blog. I’ve written a handful of posts about my diagnosis process and then what my surgery and recovery process looks like over there. And I also have a few videos of what life looks like. I’ve done like an annual video kind of check-in just to let people know what life looks like now. So, people can find me there and I’m always happy to chat about it. Answer any questions, try to help point you in the right direction. Obviously, I am not a medical doctor or physician, but if I can give you what my experience looks like and maybe point you to resources that I know of, I’m always happy to do that.

Ariel: And as always, I will link Karissa’s blog and her Instagram down in the show notes. So, if you are interested and wanting to get in touch with her, feel free to just scroll on down and grab that information. Karissa, thank you so, so much for being here today. I learned so much.

Karissa: Thank you for having me. I really appreciate the invite.

Ariel: Everyone, like I always say at the end of the podcast, we all have colon. So make sure that you ask your questions, do your research, and have a conversation. All right. We’ll see you next time on the “Colon Health Podcast.” Bye, everyone.