Bowel Moments
Real talk about the realities of IBD...On the rocks! Hosts Robin and Alicia interview people living with Crohn's disease, ulcerative colitis, or indeterminate colitis (collectively knows as Inflammatory Bowel Diseases or IBD) and the medical providers who care for our community. Join us to meet people affected by IBD- we laugh, we cry, we learn new things, we hear inspiring stories, and we share a drink.
Bowel Moments
Surviving the Holidays and End of Year Tips with Stacey Collins, RD
Could your holiday season be a little less stressful and a lot more joyful? Our latest episode of Bowel Moments provides you with the tools to do just that, especially if you're navigating the festive chaos with Inflammatory Bowel Disease (IBD). We have the pleasure of welcoming back Stacey Collins, a registered dietitian and IBD specialist, who not only shares valuable professional insights but also her personal experiences in managing dietary restrictions. Together, we offer practical tips and heartfelt advice on how to enjoy holiday gatherings while keeping your health a priority. From thoughtful strategies like bringing your own dishes to gatherings to understanding the importance of choosing safe snacks, we discuss how to make this time of year not only survivable but enjoyable.
We also take a deep dive into the financial side of healthcare management, especially pertinent at the year's end. We explore how to maximize your healthcare benefits through strategic planning, whether it's scheduling medical procedures before the year closes or effectively using Health Savings Accounts (HSAs) and Flexible Spending Accounts (FSAs). Chronic conditions like IBD come with their own set of challenges and expenses, and we shed light on how these financial tools can ease the burden. With practical tips on managing these accounts, you'll discover how to make the most out of your healthcare benefits and minimize out-of-pocket expenses.
Finally, we touch on the emotional journey of living with IBD, emphasizing the importance of self-care and setting personal boundaries during the holiday season. From the relief of being able to enjoy simple pleasures, like eating fruit again, to using humor as a coping mechanism, we share personal stories and tips for thriving amidst life's challenges. As we wrap up the year, we encourage our listeners to prioritize well-being and find joy, reminding everyone to cherish the moments that truly matter. With warmth and gratitude, we toast to a healthy and joyful new year and invite you to share this episode with friends, rate, and review our show. Cheers to a wonderful year ahead!
Links:
- Health maintenance checklists- Crohn's & Colitis Foundation- USA
- Info on HSAs & Other Tax-Favored Health Plans- IRS USA
- The Difference Between a Flexible Spending Account and a Health Savings Account- National Institutes of Health
- FSA vs. HSA: What's the Difference? - MetLife
- Eating During the Holidays- video from the Crohn's & Colitis Foundation USA
- Nutritional Therapy for IBD website
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Hi, I'm Alicia and I'm Robin and you're listening to Bowel Moments, the podcast sharing real talk about the realities of IBD Serve on the rocks. This week we brought back friend of the show and friend of ours, registered dietitian and IBD specialist, Stacey Collins. We talked all about surviving the holidays and Stacey talked about it from the patient perspective as well as from the registered dietitian perspective as it relates to food and the holidays, which we know is so important and an integral part of the holiday season. We also talked about all those end of the year things like using your flexible spending account and your health savings account and doing all the health maintenance things you need to do before you run into a new plan year. We definitely got a little bit silly with this conversation, a little bit deep and sometimes a little bit dark, but we know you'll enjoy it, Cheers.
Speaker 2:Hi everyone, Welcome to Battle Moments. This is Robin.
Speaker 1:Hey guys, this is Alicia and we are so absolutely delightedly, wonderfully happy to have our friend Stacey Collins back on the show. Stacey Collins, registered dietitian extraordinaire. Welcome back, stacey. Thank you, alicia and Stacey Collins, registered dietitian extraordinaire. Welcome back, stacey.
Speaker 3:Thank you, Alicia and Robin, for letting me come hang out with you guys on this very perfect Saturday.
Speaker 1:It is a very lovely Saturday, stacey. We will get back to why we're having you on the show in just a second, but our first unprofessional question what are you drinking, drinking?
Speaker 3:coffee with a very small splash of heavy cream, because it's in the morning which isn't early, but it's still morning, so it's still morning.
Speaker 1:Also, was it Robin I think it was you that was telling me that cream is sort of superior to skim milk because it has less sugar. Is that right?
Speaker 2:I was telling you that cream is superior to skim milk.
Speaker 3:I'm not a milk expert. Less lactose. You mean yes, yes, which is the sugar?
Speaker 1:Yeah, these are facts.
Speaker 3:Thank you.
Speaker 1:This is and thank you very much. I will tell you. I remember that from January, when we were at the Crohn's and Colitis Congress, that I was putting something in my. I was like something about cream and you're like well, cream is really better for you. And blah, blah, blah. And I was like I did not realize this. So, thank you, Robin. Depending, I did not realize this. So, thank you, Robin.
Speaker 3:Depending on your lactose tolerance level, Like for me, I can do a splash of heavy cream. Could I do a whole cream-based sauce? You know I'm not going to have a good time, but sometimes it's worth it.
Speaker 1:Sometimes that fettuccine needs Alfredo Sometimes it just does. Robin, what are you drinking?
Speaker 2:Since we decided to have this call in the morning, I am also drinking coffee with some heavy cream, but drinking coffee with some heavy cream, but I added a splash of Kahlua.
Speaker 3:Oh, that was a good idea.
Speaker 1:Yes, I love it. I thought about it. I had I had opened a bottle of champagne while I was making cheesecake last night. I so I thought about it. I'm like do I do a breakfast cocktail? I chose not to, which is, I know, a little bit surprising for me but I am drinking a latte.
Speaker 1:And then, in both of your honor, I made a smoothie. Oh, I love this. I just got one of those like packs of like frozen fruit and then it also has like some kale and spinach or some nonsense in there as well. I doctor it a little bit, but I made it. I made a smoothie just for you guys. No, no, it's beautiful.
Speaker 3:Cheers, cheers.
Speaker 2:Cheers. I almost made a smoothie too, but I committed to the Kahlua this time.
Speaker 1:I mean, next time just put it into your smoothie and then a Kahlua smoothie.
Speaker 2:Maybe, if I have a banana honey Kahlua smoothie, that might be good.
Speaker 3:I like that with a little bit of cinnamon in it.
Speaker 2:Some Greek yogurt. It sounds delicious.
Speaker 1:Oh my God, I'll put it in the show notes. Experimental Kahlua smoothie recipe. I love Robin.
Speaker 2:I could put one of my vanilla protein shakes in there Banana honey, vanilla protein shake, a little dab of cinnamon and some Kahlua Sounds delicious. I might try it after the show.
Speaker 3:I like that your whole design is centered around the Kahlua. You're like what else could?
Speaker 2:I combine with this Kahlua to really highlight the Kahlua experience and I think that's important. In my much younger days, before my IBD diagnosis, I was a huge fan of white Russians.
Speaker 3:I could simply never. I am not.
Speaker 2:This was a long time ago, because I am, you know, not young anymore.
Speaker 3:Join the club, you have to use a mindset right. That's right Splash of Kahlua in my car.
Speaker 2:I can do Full on white Russian. Probably not a good idea.
Speaker 3:That's probably going to humble you over and over.
Speaker 1:I mean, what if you just added coffee to that? That's basically what you're drinking. You're basically drinking your white Russian, aren't you?
Speaker 2:No, white Russian is vodka, kahlua and a little splash of cream.
Speaker 1:Okay, I forgot about the vodka. Part of that, nevermind Okay.
Speaker 3:Modified.
Speaker 1:You're making the adult version of a White Rush, which is just coffee instead of the vodka. That's right, interesting, okay. Well, listen, guys, it's not about inventive smoothie recipes With glue. Or the sins of our past.
Speaker 2:That's right.
Speaker 1:It is about the holidays. So we are deep in the midst of December, which I'm not really sure how that happened. So we want to talk about end of the year slash holiday things, survival, survival yes, survival is the right word. So let's talk about the surviving the holidays and also just kind of things that you should know health-wise at the end of the year. So this all started because we were texting each other and we said, hey, stacey's having a holiday party, how does one survive the holidays living with IBD? So I'm going to pitch that to both of you, because you both have to survive the holidays with IBD.
Speaker 2:For a very long time I have set boundaries for the holidays. I was a single parent when my kids were little and lots of people to visit and we didn't visit them. We stayed at home, we cooked our own food and we had our own little, just the three of us kind of holiday between my girls and I. Every once in a while we'd go visit someone, but I really just didn't want the craziness of driving from place to place to place and not knowing what they were going to have to eat. And with the girl I mean with the girls too it's very overstimulating when you have kids and stuff. So I had the privilege of having that knowledge early on and set clear boundaries. And now that I'm older and my kids are adults and we live and work in a remote world, it's a little bit easier.
Speaker 2:I do invite people to my house. If I'm going to someone else's house, I will prepare food and bring it with me to donate a dish to what they're eating, so that I know what I can eat. This year I am unfortunately back on the struggle bus and I'm very tired. I'm sitting with a heating pad. I next week on Wednesday when we publish this episode, I will be having an upper endoscopy and a pouchoscopy because of how symptomatic I've been. So this year I'm bringing people to me, my girls are flying Florida to stay with me and we are just doing low-key holidays with just both of them and us, and that's how I'm surviving the holidays this year.
Speaker 3:Robin, how did you have boundaries back in the day before? Boundaries was such a buzzword.
Speaker 2:When I was much younger, I worked in retail and restaurants and you always work during the holidays. Your busiest time of the year is during the holidays, and so I kind of use that as my excuse that I had been working a lot before and after the actual day and it was really hard for me to do all of that commitment to all the different families. It wasn't feasible for me to do that and I am a direct communicator and I can say no. No is a full sentence, and it took my IBD diagnosis for me to learn that lesson that I can say no. So I grabbed a hold of that and stuck with it.
Speaker 3:I feel like Robin has always been a really good friend in my life because, well, okay, let me back up Before we were friends, we were colleagues, and I was telling Alicia just last week and how nice it is to have direct communicators in your life like Robin, and you realize how rare of a skill that really is. And then you know, in the words of Queen Brene Brown, clear is kind. It's so nice when you don't have to guess what people mean. You don't have to guess their intentions, because they're very clear about what makes them feel safe and what you can do to make them feel supported. And so, anyway, I really value that about you. I think that it's a really important skill that you've cultivated and I know that I'm a better person for having witnessed that in action.
Speaker 2:Thanks, Space your turn. How do you survive the?
Speaker 3:holidays. So I'll just say that this year has been the first year of many years that I feel more excitement and hopefulness than dread, and let's just survive. I think that I am skilled at survival as a patient. I'm not always skilled at thriving, so this is like a new uncharted fun territory for me and my brain to embark upon. It was nice because last night we hosted some people over to our house. They were Zach's co-workers in his little department, so we kept it small. It could have easily, you know, expanded to other departments, even though Zach had friends in other departments.
Speaker 3:I was like I feel comfortable with enough people who will fit in our house, which is, you know, not the whole company. So it kind of started there and I love, as a dietitian, getting to host and make other people feel safe in a holiday party setting. So we sent out a little Google invite to his colleagues and in that invite you could fill out a form if you had any dietary restrictions. I made it to where you can make it anonymous so that there were different options if people had nut allergies or if people had, you know, a gluten free preference. I made sure that there was an option for everyone and I just made little note cards on different food items you know this one doesn't have this, this one has this Heads up if you have a nut allergy. This, you know, can't be mixed with this and keeping dips separate to make sure that everyone was safe if they had celiac disease. So it was really nice.
Speaker 3:I feel like it was kind of healing for me as a patient to get to host a holiday celebration that was inclusive of everyone's dietary preferences and I don't know why people have those necessarily. I didn't go around asking people or talking to them about them, but it was just nice to be able to kind of have the holiday party that I always wish. I was invited to Very low key, very tacky Christmas music the whole nine yards. It was really fun and very chill. So we had like a happy hour. Then we went to Zach's work party, which was a total opposite experience.
Speaker 3:As an IBD patient. I was like this is hell. And then we came back to our house and had like a post party, which wasn't initially planned. So people ended up coming back over in their pajamas and in their sweatpants and I love getting to host the party where people feel comfortable enough to just come as they are, so I don't think I answered the question entirely, but surviving the holidays, I think, requires from other people consideration, and if you're a patient, it requires a considerable amount of communication and people who allow you to express that, and also some planning ahead and some introspection on your part as well. And I love what you said, robin, about just like making your own dishes, having holidays in your own space and having boundaries.
Speaker 1:So what I hear you guys saying is clear communication boundaries. If you are going to go someplace, making a dish and bringing it so that you know there's something you can eat, or communicating with the other person so that they can hopefully accommodate you like Stacey did. What about the inevitable times when you can't necessarily, or the way things work out is that you're not able to have it in your own home but you do have to go to someplace else? You have to travel to see family. Any suggestions for folks there?
Speaker 3:That's really tough and I'm a big fan of the purse snack. I realize that's probably a very gender specific recommendation, but you know, hiking pack snack it doesn't have to be a beautiful holiday meal, it just has to be nourishment that feels like it's not going to make your holidays suck more from a GI standpoint, like it's not going to make your holidays suck more from a GI standpoint. So for me that looks like go macro bars. They're processed, yes. They're also very simple ingredient profile, made of whole foods. Could they be higher in protein? Yes, but at the end of the day I know that it's going to provide me with some nutrition and I know I'm going to be able to at least feel a little bit satiated so that if there are limited options at the next meal I can choose a few small things.
Speaker 3:Smaller portion sizes are often going to be the way to go in these scenarios, because you don't want to overcommit to something that you're just not quite sure how it's going to feel in your body If it is kind of in a gray area or a full blownblown flare with IBD, that can be really tough. So, making sure that you have planned ahead, you've maybe even you've worked with a dietitian to make sure that you understand which snacks work for you, which fruits work for you, which ingredients are gonna work for you. I say which fruits because I also always, weirdly, have kiwi and oranges in my purse. I realize that's not like a common thing, but I think it is something that people make fun of me for quite often. But anyway, yeah, making sure that you have just some options on hand that are quick and easy. They don't have to be sexy or Instagram worthy, they just have to make you feel okay in your body to get you through to your next meal.
Speaker 2:I'm a fan of snacks as well. Now that I have the J pouch although not recently because of being symptomatic I like kind bars. I can actually eat nuts now, since I got the J pouch, which is like woohoo. And then there's another bar that I can't think of right now. They're like three ingredient bars and I can't remember what the name of them is, but I like those two now. Yeah, I try to do very small portions if I'm going to eat at someone else's house, but also if we are visiting family. We are at the point in our lives where we can just tell family that we are not staying with you.
Speaker 2:And we, you know, get a hotel and Airbnb, you know something like that, but we very rarely stay with people when we're traveling to see them, so that makes it a little bit easier to, like, run to the grocery store before you go to someone's house, or something like that.
Speaker 1:I love that. I do like that idea because it does make it mean that you probably have a chance to make your own breakfast or, you know, be able to make something and bring it with you if you're staying someplace that has a kitchen, exactly.
Speaker 3:Yeah, I always like to invite people to join in. I'm making this, if you want some. It doesn't have to be like a big declaration of your diagnosis or your symptomology. You can just be like I'm making this for breakfast, who wants some? And kind of along the lines of like Robin's no is a complete sentence. You don't have to add a disclaimer to everything, but you could still invite people to participate if they want. It's tough too, though, because a lot of holidays bring about a lot of conversations around food that may not feel easy to traverse with IBD. Yeah, holidays are tough. Holidays are really tough.
Speaker 1:Lots of ways. Yeah, I mean honestly one of my maybe it's a little bit sneaky things is to make stuff that's gluten-free and not tell people. And then they don't know they're eating gluten-free people and then, like you know, they don't know they're eating gluten-free, nobody says anything and for the most part, like nobody notices. And then I start eating it and they're like hang on a second, is this gluten-free? I know it's a little bit sneaky, but stuff can be modified pretty easily. In a lot of cases. You know flour blends and stuff gotten a lot better, and so I think it's kind of fun to be able to introduce people to like this idea of that things can still taste really good and still be modified.
Speaker 2:Gluten-free has come a long way. I mean I feel like it's easier. You don't even have to be really sneaky, right?
Speaker 3:I mean it's easier because, like you said, like the types of flours that are available and sweeteners that are available, you can also, you know, talk to family members about how to modify certain recipes to make them feel better for you. I was talking through this just last week with a patient whose parent insisted on doing, you know, like the jello salads from the sixties and seventies, and I'm not going to lie, that's a tough thing to try to modify. I'm like, wow, that's right, we might have to collaborate with mom on maybe something else. But I mean, you really can make a lot of things from scratch that resemble the salads. They're just, you know, they do lose the convenience factor of just like opening a pan of a whip. Reminds me so much of my childhood in the south.
Speaker 1:You know what, though? Ambrosia salad. Isn't this like a southern thing? Ambrosia salad, which is like mandarin oranges fruit cocktail. Yes, yes, cool whip. And I remember when I was a kid, thinking like this is the best salad I've ever seen, because like it's nothing but sugar. Right, I'm a hundred percent addicted to sugar. I don't eat any of that anymore. But it's just like when I was a kid. I'm like, yes, bring on the salad man.
Speaker 3:Yeah, the maraschino cherries. I think that was part of it too.
Speaker 1:Can't forget those Maraschino cherries are so good. It's just sugar. I love it, Basically candy, but it's fruit. Quote unquote. Do we want to stick with the perils of holiday parties and family for a little bit longer?
Speaker 3:If you want to go eat out for the holidays, but you want to come across as easy breezy. But you're actually a little bit of a control freak because IBD has made you this way. What you do is you screen some menus. You make sure you understand, working with a dietician perhaps what to eat in a flare, what to eat in remission, what to eat in between? How are you checking in with yourself? Look at the menus which things offer solutions for you that feel like they're going to allow you to experience the evening, the holiday, with your loved ones? And then you create a list in your notes app several restaurants. You present those options to the group, but you know that you have an option at every single restaurant on that list and you were like hey guys, these are the places I'd really like to try. What do you think about one of these? I will make a reservation and boom, you are easy breezy and in control all at the same time.
Speaker 2:Yes, I love that On a side note, because I did check in with my dietitian, stacy who happens to be on the show with us right now because I am symptomatic. And actually Stacy checked in with me saying, are you okay? And me having to say no, I am not okay. And asking me about what I'm eating and me saying, at this point my body's going to do what it's going to do, so I'm eating whatever and if something hurts me, then I won't eat that again. So sometimes I am so aggravated with what's happening inside my body I'm just like it's going to do what it's going to do and I can't not eat, which I find myself eating less and less and less right now, but then I can't not eat because then I'm getting a headache or I'm getting nauseous or you know something like that, and then I have to eat something. So, which makes it worse, because then you're not eating, then your body's like you have to feed me. So I feel like that could be added stress during the holidays.
Speaker 2:So, in your effort to try to normalize life, try to live normally, try to work and navigate the holidays and everything, even if you have to, like, set a reminder for yourself, like if you're symptomatic and you know that you are avoiding eating, setting a reminder for yourself, I add calendar blocks to my work day to say, like, go eat something if you haven't eaten, because I find myself eating later and later in the day for the first time and then that kind of makes me feel even worse.
Speaker 2:So if you're going to go out, in this instance 100% I eat at home before I go because I, even if I peruse the menu and have an idea, I'm not going to want to eat a large amount of whatever that is and I don't want to come home hungry at night, feeling even worse. So in that instance, I'm not going to eat a full meal before I go, but I might actually eat something before I go to the restaurant. So I can still feel easy breezy at the restaurant and not feel like I'm I was going to say, letting my body win and not feel like I'm letting my body win. So there's always an option to like have a little bit of food before you go out to dinner to help alleviate the stress of eating up.
Speaker 3:That's really a perfect example of how you can maintain consistent nourishment. Give a couple of good examples. You know scheduling calendar blocks in your day, which I have to do as well, because I will just manically work through a lunch hour and then Zach will get home from work and be like why do you hate me in the whole world? And I actually don't. I just haven't fed myself for the whole entire day. So that's an important thing to do. And then also getting to still participate in those moments with your family, but in alignment with a way that looks and feels good-ish in your body right now eating before you go out but so you're still able to participate and you're still able to stay nourished. That's good. You know using nutrition to kind of in some way have somewhat of a routine that your life is sort of built around.
Speaker 3:I love talking about the joy and finding you know how we can enjoy food, but we're not all there all the time with IBD. Most of us aren't. Truthfully, I talk about that at Nauseam because I think that there's so much talk online about inflammatory foods and you did this to yourself and a lot of us are high performing. It seems like a lot of people with IBD are high performers, who are very hard on ourselves, who will work ourselves to the bone type of personalities. A lot of times that just seems to be what I encounter, and certainly projecting my own experience here.
Speaker 3:But I think sometimes we let good be the enemy of perfect and if we don't just allow time to try to put some sort of food in our bodies, recognizing that our appetites are going to be suppressed in that inflammatory process, recognizing that we can't rely on our hunger and fullness cues in a flare to remind us when to eat, how can we still support our muscles, how can we still set ourselves up for the possibility of healing through this flare? It's going to take a little bit of planning and it's going to take a little bit of consistency on our parts and it is possible to live a really full life with IBD. But my God, it does require some cruise ship directing level of attention to detail at times and that feels insurmountable with the fatigue. So I think that's great points that you mentioned.
Speaker 1:Well, and not eating contributes to fatigue as well. So it's kind of a vicious cycle of like if your body doesn't have anything to burn, you're going to be tired, but in order to plan it you got to not be fatigued. So it's. It is a kind of a catch 22,. But I don't know, robin. I mean you, you've said in the past you just even the supplementation with like some nutrition shakes, you know like the Cape farms kind of that you throw into your Kahlua coffees. You know it's, you know how that is. There are things that you can do. That it's. You know it's simple, you know it's easy. You're not really going to feel like eating, but you know that you can tolerate this kind of thing. It's just having some of that on hand so that when you need to eat something but you're not feeling great, you still have something to.
Speaker 2:Yeah, I mean, I have shakes in my fridge right, just for that. One thing that I have to remind myself and thank you, stacey, for reminding me this week I have upper GI Crohn's, I have Crohn's in my stomach and a J pouch. And, stace, what's the stat? One to 2% of all Crohn's is upper GI or in stomach, so there's not a lot of us and a J pouch. So how many people is that?
Speaker 2:So this is relatively new to me in 2017, 2018 is when I went into a horrible, horrible, horrible flare, when my diagnosis got changed, and so being able to actually actively recognize symptoms this time around has been interesting, because Stacey and I on this show talked a lot about gas after the J pouch getting the J pouch, having a lot of gas. We text each other about gas, but I started realizing that it wasn't all gas that was causing my discomfort and pain, and so that was like a light bulb moment, and then my husband told me just last week you're not doing great. Like you are not doing great, I need you to recognize that. And so I had to do some self-reflection to be like oh yeah, I have to stop gaslighting myself, I have to stop normalizing symptoms and I have to acknowledge that I'm not doing great, which is really hard to do after you're feeling well, after feeling so bad right, you're feeling so bad, you're on the cusp, near-death experiences and then you feel better again. And then you have to acknowledge that now I'm starting to have symptoms again, and so, especially during the holiday season, when I just wanna be able to be with my family and make great food for them and enjoy this time of the year I love Christmas it makes it hard, and then having to try to differentiate what my symptoms are like, am I overanalyzing it? And then I start to feel pain and I'm like, oh, this is the pain that I was feeling back in 2017 and 2018. Okay, so then you know what do I do? Then I have to send my doctor a message in the patient portal, all the while telling myself that I'm not making this up. I am actually feeling these things in my body and we have to do the test to find out about it all.
Speaker 2:While trying to navigate holidays and make plans with my kids and while I have all of these great tips and tools and tricks and recommendations and all that stuff. I'm having to actively navigate that this year and I think the hardest part about that is stuff I'm having to actively navigate that this year. And I think the hardest part about that is acknowledging that I'm having symptoms again, acknowledging that while my doctor and her team are some of the best in the country surely probably the world I am a unique person. Like there's not a lot of research about what I'm experiencing. So I'm like gearing up to advocate for myself, to try to get this stuff done before the end of the year, when people are taking time off and when insurance is like you know, hey, can we do my scope at the end of the year instead of waiting until January Because I've reached my maximum out of pocket, you know.
Speaker 2:So it's like it's not just food and going to parties and having holidays with your family, it's also I have reached my maximum out of pocket. So what do I need to have a scope? Do I need to have blood work done? Do I need to go and see my GI? Do I need to see my PCP? Like what are all of these other things that, as a patient who is experiencing symptoms again, what am I trying to get done before the end of the year and navigate the holidays?
Speaker 3:Yeah, I think a lot of people are feeling that same way right now, because the state of affairs in the world is a little stressful for people all over the world right now and no one is ever just navigating the holidays, especially with IBD.
Speaker 2:Hi guys, this is Robin and we are currently scheduling our interviews for 2025. If you would like to be on the show or if you know someone that you think should be on the show, please let me know. Send me a message on Instagram or send me an email, robin, at bowelmomentspodcom.
Speaker 3:So, in summary, just around the holidays, thinking about planning ahead your meals, a little bit, communicating with your loved ones if they're people who allow you to feel safe and supported, which I know in itself is an immense privilege Checking in with yourself, making a list of safe foods that feel okay in your body right now, ignoring all the foods that don't, because that list might sometimes feel way larger. The goal is, over time, to understand that your safe foods list can expand and what doesn't work for you today won't feel that way perhaps even in the next holiday. Making sure that you are planning ahead to include menu items from restaurants that you can choose. You have your travel snacks. You've got your travel tools If you're traveling on an airplane. You've got tools to understand how to move gas along in your body so it doesn't get trapped and make your discomfort worse.
Speaker 3:We didn't even talk about that, but it is an important thing to mention. Making sure that you are able to participate in holiday events and not isolate. So in Robin's instance, that looked like eating a little bit before going out to eat with a group so that she maintains that consistent nutrition, and that's kind of the last piece is if you're able to maintain some sort of mealtime consistency, even if it's not a beautiful meal, even if it doesn't look perfect, even if it doesn't meet your ideal of what you feel like you should be eating. Those are all things to get extremely curious about and work through with a professional, but maintaining some sort of consistency in your structured routine, which you can do just by setting alarms whenever those hunger and fullness cues are disrupted by inflammation.
Speaker 3:Those are all things I think anyone, no matter their phase of IBD, can kind of start to get curious about implementing through their nutrition. And that was just kind of. I wanted some people to have a little bit of some key takeaways for moving through the holidays with nutrition. I think those are some tried and trues Not to dismiss the last part of what you said, Robin, because I think that we need to talk about how to navigate the whole picture, not just the nutrition thing Before my rant.
Speaker 1:I think that was an important rant. I do think, Robin, you bring up a really good point of all of this sort of in the midst of having to do all of the chaos of preparing for the holidays, doing all the things with your families, all these holiday parties, navigating all of that. Navigating all of that, there is that aspect of like all of the stuff that you potentially need to get done before you go into your new healthcare plan year and all of your co-pays come back up and or you have to use your health savings accounts. So that's super important. So can we spend a little bit of time talking about kind of how you guys navigate that?
Speaker 3:So as a patient. I am not always the best patient and I actually remembered the other day that it's December. We're now in mid-December. I'm pretty sure I remembered this December 1st. I was like I need to ask my GI doctor to recheck my iron that we repleted back in August to make sure that it stuck around, and if it didn't, I need to hurry up and get in for an infusion because it would be covered and it would not cost me, you know, $1,600 out of pocket. And then I just completely neglected the fact that it's now December 14th as we're recording this and didn't check back in, didn't circle back.
Speaker 3:Very likely I'm going to have to pay another $1,600 because iron care is part of your IBD care and even though I eat a lot of lovely iron rich foods, I'm still going to need an infusion because that is the flavor of IBD that I have and that is a bummer. So usually I try to look at like, okay, these are the things that are going to cost a lot of money, these are the things I've already paid for this year. How can I maximize on that? I don't have the verbiage to understand exactly why that is. So Robin might be a better, better person to talk to through that, but that's just how my brain approaches it as a patient.
Speaker 2:This year is the first year that I thought I might not hit my max out of pocket. And I'm not just talking about like hit my deductible, I mean family max out of pocket and I have a high deductible plan. So when I found out that I did hit my max out of pocket, I was like, okay, what else do I have to get done? And also also, do I have the energy to do? So? I have recently been seeing a pelvic floor physical therapist regularly and I don't have I have to drive like an hour, hour and a half to see this person one way, and so I'm like I don't have the energy to do that over the holidays, so I'm going to circle back with them after. But I did have to have a scope. When they called to schedule my scope, they're like, oh, in early January, and I said, can we make it in December so that it's covered by my insurance in this?
Speaker 1:year.
Speaker 2:And so they were able to do that, you know, mid-december to get my scope in. But then I'm also asking like blood work. I also have the flavor of IBD that I've had to have iron infusions in the past and so do we need to have blood work for my rheumatologist. I need to have x-rays. I wanted to make sure that I get those in before the end of the year and I've sat on here before and I've even shared when I've been having visits that I go to Mayo. So if I'm driving all the way to Mayo I want to have all of that stuff done at the same time, if I can. But I'm also like getting my eyes checked. So I have to get my eyes checked pretty often because of the IBD. I haven't had any problems yet, but there've just been signs, and so every time I see somebody that checks my eyes they're like okay, let's see you again in six months because of that. So I haven't had any problems with my eyes, but every single time they're like let's see you again in six months. So I have to get that done before the end of the year. And then I'm looking at my HSA and my FSA, so it's not just like what's covered in my insurance and have I met my deductible or max out of pocket or anything like that it's? Do I have funds to pay for it? In these two programs and they're two very different programs One of them rolls over one of them you lose the funds if you don't use them. So I feel like if you have IBD or someone in your family has a chronic illness, even you really need to be familiar with the ins and outs of your insurance policy.
Speaker 2:I'm the one who has insurance for my family, and so we every year, before it's time when it's open enrollment, we go through, we look at what we spent in the previous year, we add everything up and we're like okay, what's the most cost-effective insurance for us?
Speaker 2:Is it where it's a copay, ppo kind of situation, or is it the high deductible, where we have to pay more out of pocket at the beginning of the year, but overall the cost for the whole year is less? And so I don't think that people understand how that works sometimes and they end up paying their premium and then still paying a copay, and they don't understand that by the end of the year, because of how expensive their premiums are, they actually ended up paying more than if they had done high deductible. But not everybody has money at the beginning of the year to pay for everything out of pocket. So I know it depends on your situation and what you can do, but I'm always trying to not pay the insurance company money, so that's what we do. And then, because I have a high deductible plan, I have an HSA and the company that I work for also provides an FSA. So HSA only is available if you have a high deductible insurance plan and an FSA is only available if your company sponsors it, like that is a company sponsored program.
Speaker 1:So what are the acronyms HSA is health savings account.
Speaker 2:Health savings, flexible, flexible spending. So HSA is health savings and FSA is flexible spending.
Speaker 3:Can you explain a little bit about?
Speaker 1:Yeah, I'm like what is the flexible spending one do? Robin, human resources yes, Fill us in.
Speaker 2:I am not an agent, so health savings accounts are just that savings accounts. It is not like employee sponsored. It's available to you if you get a high deductible plan and it is portable, which means that if you change employers, your health savings account goes with you and if you don't spend all of that money, it earns interest and can be an investment too. And it is pre-tax dollars.
Speaker 2:Flexible spending account is sponsored by your employer. It is not portable. So if you were to leave your job, any money that was put into that you don't get to take with you and it does not roll over. So however much money you have in a flexible spending account, you have to use it by the end of whatever that term is. I'm going to use mine as an example. So it goes through the end of the calendar year, but then we have a three-month grace. So I'm lucky that if I have anything done in January, february or March that qualifies for my FSA, I can still use this calendar year's FSA in January, february, march, but then by the end of March that's it. If I haven't used all the money, I lose. Whatever is in there and the flexible spending. I don't know all the ins and outs, but it has to do with tax, taxes and how that works.
Speaker 3:I do know that you can buy SPF with that, because I did.
Speaker 2:Yes, it is available online and I think that there might be differences for each one. But you can purchase over the counter-counter items with your FSA so you don't lose that flexible spending money over-the-counter meds, sunscreen, that kind of stuff. But you can look that up with your actual policy and it will tell you what you can do. And then flexible spending dollars can sometimes be specific. So, like originally at my company, the flexible, the FSA, was just for vision and dental and so I could only use FSA dollars for going to the eye doctor or going to the dentist. And then just recently it changed and now primary care appointments count under that flexible spending and FSA.
Speaker 2:You have to submit a receipt to be reimbursed by a certain deadline, like you have to prove that you use the funds forursed by a certain deadline. Like you have to prove that you use the funds for what you're saying you're using the funds for and they're going to reimburse you. An HSA it's not the same because it's like your health savings account, so you can either use it to pay for the appointments in the moment or then submit to get reimbursed afterwards. I don't think I've ever had to submit a receipt for my HSA, but for the FSA, I have to submit a receipt every single time, so that's something to keep in mind too. You should always save your receipts if you're getting reimbursed. But FSA you have to submit your receipt in order to be reimbursed, because they have to check to make sure it qualifies for what the flexible spending account is set up for.
Speaker 3:So, like you can see allied health professionals and it sounds like you're having to see pelvic floor PT, dieticians, whoever it is that you need to see who isn't 100% covered by your insurance or covered at all If you have a doctor's referral and everyone probably listening to this show has a confirmed diagnosis of some type of Crohn's disease, ulcerative colitis, indeterminate colitis, microscopic colitis you have that diagnostic code. You can see these allied health professionals and use these accounts to kind of cover whatever isn't covered by insurance, right?
Speaker 2:Yes, that is correct, Huge. I definitely use my HSA for my public floor physical therapy appointments Same game changer.
Speaker 1:Game changer. You said you used your health savings account for your pelvic surgery. Okay, so what's an example of what's something that you've used your FSA for?
Speaker 2:I have used the FSA for dentist, my eye appointments, purchasing glasses, my kids' braces, lots of contacts, and now, probably around mid-year this year, primary care like visits have been approved for the FSA. So Matt just used it for going to like a well check at primary care. So and then I use the FSA. If there is any money left at the end of the year, I use it to like get not sunscreen but over-the-counter meds. So some of the over-the-counter meds that I take I use it to restock.
Speaker 2:You know our house with that kind of stuff and I have to look it up because I never remember all the things that are available for FSA. So I look it up. I also have my HSA card and my FSA card saved in my Amazon account so that if I buy over-the-counter meds or something like that from Amazon, I can just use it to pay for it right there and it'll let you know if it's eligible or not. If you do it that way and some FSAs actually have like the website will link to a store like an FSA store, and so everything that's available there is available for you to purchase with your FSA account.
Speaker 3:Oh, also, therapy is covered as well. Yeah, it's usually like March is about to roll around and Zach's like, hey, we need to make sure that all of these things are put on these accounts and we have receipts for these things, and it's like a lot of mad dash to the finish sort of energy, because I also tend to forget that we have these things and I just complain and lament at the cost of things and forget that I actually have money set aside for that.
Speaker 2:I mean, one of the benefits is pre-tax right, so that reduces your tax burden. Is these funds get put into these accounts?
Speaker 3:Roll over. It's our money, but that's a rant.
Speaker 1:That is my beef is. I've definitely donated quite a bit of money to whatever company it is that that's supposed to be doing this, because I forget about it and it doesn't roll. So this is your.
Speaker 2:Yeah, this is your reminder. Don't be like Stacey and Alicia Go check your HSA and FSA accounts. So HSA, that money does roll over, you can keep it with you, but FSA does not. You will lose. So make sure that you are familiar with the policies and restrictions and guidelines of your FSA account.
Speaker 1:Get some sunscreen. It's funny, as you say, that like HSA rolls over. I don't know that. I knew that. I thought it didn't, so I definitely probably have a health savings account somewhere that still exists that has like thousands of dollars in it that I've never used. I'm going to have to look into this.
Speaker 2:Go find it. I always think that it's going to be like a great. I'm like one day I'm going to just not use any of this money in my HSA and I'm going to. It's going to just be, you know, thousands of dollars and then by the end of the year I'm like, nope, it's at zero again. But at least I had it to pay for all of tax free, to pay for all of these bills. Maybe one day.
Speaker 1:It's a dream.
Speaker 1:One quick thing, though that you mentioned that I don't know that we've really spent a lot of time on, but, robin, all of the things that you mentioned that can go along with Crohn's disease in particular is getting your skin checked, getting your eyes checked, appointments to get your joints checked, that kind of stuff. Getting your bone scans done because you've probably taken steroids, all of those health maintenance things that go along with it, but just other things that you don't know that could be related to your IBD. So I think I'm glad that you mentioned that, because I don't know that we spent a lot of time talking about that.
Speaker 2:I feel like I think we probably have said this like having a chronic illness is a full-time job. Having a chronic illness is a full-time job. So I definitely have to get a bone scan, definitely have to get full body scan with a dermatologist, blood work three or four times a year. Rheumatologist like I'm getting x-rays. I haven't had x-rays in a year and so they want to do x-rays again. Eye doctor right, because eyes are an extra intestinal manifestation for people with IBD.
Speaker 2:I think that everybody should see a pelvic floor physical therapist because you are going to the bathroom more than normal. While this is not a bathroom disease, there are so many other things. If you've listened to even a handful of our episodes, you know there are so many other things that go along with this, but going to the bathroom is a part of it, and seeing a pelvic floor physical therapist while I need it because of my surgeries, it would have helped me so much. Or an occupational therapist that has that pelvic floor certification Also. I saw an occupational therapist that has pelvic floor certification and now I'm seeing a pelvic floor PT regular therapy, but you can have problems with your teeth, so I mean dental checkups. Obviously that's just regular, but you can also have problems with your teeth from IBD.
Speaker 1:I mean, I just feel like the steroids can really mess up your teeth and your bones in particular.
Speaker 2:Yes, Amber said this when she was on the show, when she said she went and had her follow-up pouchoscopy and the doctor was like this looks perfect, why are you here? And she said, because cancer People with IBD are at a higher risk for cancer. I don't want to scare anyone, but it has nothing to do with the meds that you're on. I mean, while that can contribute, you just are at a higher risk for cancer, and the longer that you live with IBD, the higher the risk. And so going to the gynecologist and having like PAPs and all of that stuff is just as important as getting checked for skin cancer. And then we were talking, before we hit record, that I have an endoscopic specialist that does my scopes.
Speaker 2:My GI doesn't do my scopes because part of my problem in my rear is precancerous cells dysplasia. Like you know, my butthole just won't give me a rest, it just won't let me relax at all. And so, like having screening, whatever that looks like, to make sure that you're not developing any kind of cancer, is important too. So, like we just have to be vigilant. We just have to be vigilant. And sometimes, man, I'm just tired, I'm just too tired to be vigilant, and so then I'll take a break, like I'll do, like, okay, for three months I'm just going to live my life and not focus on this, and try to sleep and try to relax and try to rest, and then I have to pick it right back up again because I can't go too long without the vigilance.
Speaker 3:It does feel like exhausting to have a chronic anything, because the health care system is just heinous to endure. It really is. I can't think of a better word to describe it, except for just it's completely dehumanizing to feel like you're being treated like an experiment, like you're being treated like an algorithm. Even worse, doctors aren't always looking at you in the eye, they're looking at your labs and you're like hello, can we just talk about what I'm experiencing and maybe not pay so much attention to these clinical indicators that I know are of importance? But I'm trying to explain my situation to you and I'm not being heard. And like it's really hard to find a good care team, like Robin and I have been lucky to find, and even that, like I don't have a team, I have a GI doctor I still haven't found a solid PCP or OB-GYN care.
Speaker 3:It's okay to give yourself a little bit of self-compassion and, like Robin said, like if you can afford yourself a little bit of time to come up for air, you know, because it does feel like you're constantly fighting to navigate the system.
Speaker 3:You're constantly fighting against your body whenever the disease is really rearing its ugly head, as it will do sometimes, and it also feels like a conspiracy to have to rely on medications that do have hard side effect profiles, but, as Robin said, the reality is a lot of these medications decrease risk for cancers if the inflammation continues without being monitored. So it's so important that people with IBD if you don't want the medications, like you need to find a GI doctor who will continue to monitor you regardless, because if this inflammation which I tell my patients often, the inflammation that the wellness influencers are talking about is child's play compared to the level of inflammation that we experience as people who live in a body with an inflammatory digestive disease, so we need to be monitored. Whatever that looks like pouchoscopies, scopes, intestinal ultrasounds, cts, like whatever your team determines is best for you. That is the strategy that ultimately you have to stick with is some sort of monitoring strategy with a compassionate provider, which I know is easier said than done to find.
Speaker 1:Stacey from a dietician perspective. So taking your patient hat off and putting your dietician hat back on. When people are asking for blood work, what are the things that they should be asking for? Because what you've said in the past is that standard blood work that gets ordered doesn't always have what people with IBD may want to see. For instance, iron, like that came up of. Like if you're going to get an iron panel, make sure you do an iron panel and that this is included. So what are people asking for?
Speaker 3:Yeah, I think that you know. The complete metabolic panel that your doctor orders is great. You should probably be fasting for that one. But in addition to that, just every single patient with IBD needs to be getting a vitamin D at least annually. They need to be getting a total iron binding capacity with ferritin that's the name of the iron panel. You could easily just say iron panel with ferritin. Those are two vials, so we're up to three vials.
Speaker 3:If you have a history of anemia, meaning your hemoglobin, your hematocrit are low, you can feel that in your body You're sluggish, you're fatigued, you're feeling like you can't possibly get close enough to the ground because you're so tired. You also need to get your folate and your B12 checked. So that's five different micronutrient vials that should always be monitored if you have a history of anemia, especially with those B vitamins. But I think, most importantly, if you can't get anything else, get an iron panel with vitamin D. Those are very important. And then other things you can add on to really depend on the location of your disease, but that's territory for working with a clinician, I think. Oh, also, there will be a paper published very soon about vitamin C, so that might be something to look out for as well.
Speaker 2:Something. I was quieter during Awareness Week than I had planned to be, like on our socials and all of that. I had this whole plan for us to roll out, because we are live on YouTube as Amber left when we did her show she left the part in about us doing that and I was quieter during IBD Awareness Week than I wanted to be because of what I'm going through right now being symptomatic and all of that stuff and normalizing my symptoms like we do. We were talking about dealing with insurance and my medication got denied, so that was another thing that, like, really made me come to terms with being symptomatic, and this is medication that I've been on for five years now. The dose is the same, nothing has changed, and so having to deal with that on top of everything else, I understand.
Speaker 1:I think it's hard to be like, yay, I want to go out and recognize this disease, that right now I just want to like punch a wall because, like, why is this being denied? Why is this like something that feels so simple and that happened so regularly is suddenly getting like it's now becoming something else I have to deal with. It's hard to say, you know, I want to recognize something in that moment. I that sucks, I'm sorry, robin.
Speaker 3:I do have a question for Robin, with Crohn's of your stomach. When I met you, you had not had fruit in years, years, years. I met you in 2014, 2015, 2015, 2016. I don't know something like that, what is time, but you hadn't had fruit in a long, many years. Many, many years you added fruit back in.
Speaker 2:How does fruit feel right now? Are you able to eat it at all? I'm just curious. Yes, I feel like, after really not being able to eat it for so long, I refuse to give it up again, which is probably going to be problematic when it comes down to it. But I mean, I obviously still do smoothies. Like I will do smoothies. I feel like, even if I have to give it up in other ways, I'll do smoothies, but I am still eating fruit. But well, I mean honestly, every time I eat something right now, my stomach gets grumbly.
Speaker 3:So you know you're in an active yeah. I was an active player, so just curious, but also I wanted you to see that that was how that's. That's huge, that's huge.
Speaker 2:I've probably said this on the show before Alicia, but eating fruit will never get old to me.
Speaker 2:I will never not be in awe of the fact that I can eat fruit again. I'm tearing up, talking about eating fruit right now. Every time I eat fruit, I take a minute to acknowledge and celebrate the fact that I, after 20 years, I'm not eating fruit. I have been able to eat fruit for the past couple of years. It is ridiculous and amazing, and I will never, never, not be in awe of the fact that I can eat fruit now. I'm tearing up right now.
Speaker 3:I love that it still counts in a smoothie form Still counts.
Speaker 2:This is what life is, with relapsing, remitting, moderate to severe Crohn's disease. I feel like I have to remind people too, like Stacey reminded me of this because we get into the habit of even though I do the show in my personal life, I get into the habit of not talking about it, because if you talk about it, you focus on it, and I don't want to focus on being tired, I don't want to focus on not having the energy to do things, I don't want to focus on what I can't eat. I don't want to focus on all that stuff.
Speaker 3:Yeah, not wanting. Let's not like focus on the suck. Yeah, let's not focus on the suck, we all acknowledge it's there. Let's like maybe cope through a little bit of gentle, dark humor and also just like hold space for our friends, but also like fuck you, ibd, we're going to run a marathon.
Speaker 2:That is right. I mean, from the person who signed up for a marathon right after surgery. Basically, it feels like who should not have done that. I was scared. Yeah, yes, dark humor. I mean I don't know how many times in the past couple of weeks because of how symptomatic I've been, matt has looked at me and been like I really just hate your body and I'm like I know me too, me too. He's like I'm really tired of this. I'm like me too. I feel like when I'm not feeling well, I feel like a lot of his comments which actually made me feel better because they're so freaking dark and funny. I know that it's coming from a place that he wants to be able to help me and he can't.
Speaker 1:Love you, matt, wow, okay, so last question for both of you.
Speaker 3:What's your one piece of advice for the holiday season? Survive, survive and not thrive. Probably dark, let's try again.
Speaker 2:Let's try again.
Speaker 3:We thought this would be a lightheartedhearted episode.
Speaker 1:I really did guys, I did sorry, sorry everyone. You guys need to lighten your shit up, guys. No, I'm joking I'm, I'm flaring.
Speaker 2:There's nothing light-hearted about that, it's fine, I'm jaded um okay, let me think.
Speaker 3:Oh, I know for a clinician please check your iron panels on your patients like, imagine doing your job with no oxygen in your brain.
Speaker 1:Just please check our iron levels, please.
Speaker 2:Good one for me, it is number one. Give yourself some grace. You don't have to be all things to all people. Like stacy said, I feel like the people that I've come into contact with with IBD are high achievers. Perfectionists go above and beyond, like trying to compensate for something that they feel like they're lacking, or maybe something that their disease has taken away from them, and it's just not true. I would like to be the person to tell you that your 80% hell, even maybe your 60% is a lot better than most people's 100%. So give yourself some grace. And it's okay to set boundaries with your family and your friends at the holiday time, and it's okay to ask for what you need and to expect it.
Speaker 3:Yep, it's okay to come up for air in the holidays and you probably should so that you can try to be at least there for yourself, if not for other people, because you can't be everything to everyone. But you know, one of the beautiful things about this disease is it does allow us an excuse to catch our breath in the bathroom. If somebody is talking hot nonsense, you can go for a little walk. Just allow yourself to come up for some air so that you can survive and maybe even thrive, if that's an available mindset for you to try on this holiday.
Speaker 2:I want to highlight what Stacey said using the disease to get a break in the bathroom. Use it for everything. If you're traveling and you're getting on a plane this holiday season, pre-board or get assistance through TSA or whatever that looks like to make that process easier for you. If you don't want to go see that family person sorry, not feeling good Can't go, even if you're feeling great. Even better if you're feeling great, because then you could actually take advantage of not being with that person.
Speaker 1:who's putting you down, so take making you down. Auntie Robin and Auntie Stacey aren't going to throw you under the bus, I promise.
Speaker 3:I.
Speaker 1:B-E-O-S-E-U.
Speaker 2:That is exactly right.
Speaker 1:I think that's good advice for anybody, though, is to set boundaries and do what you need to do to keep yourself healthy and safe during the holiday seasons, because there's a lot of obligation for everybody. It's okay to say no. It's okay not to go to that holiday party. It's okay to sit and watch Love Island and drink champagne on your Friday night instead of be social. It's okay, that's right. Guys, thank you so much for joining me on this Saturday morning filled with advice. I appreciate it. So cheers to both of you for joining me and cheers to everybody else for listening, and since this is going to be our last episode of the year, we want to thank everybody for listening, because we really appreciate all of your ears and all of your comments and everybody who has joined us on the show, and also happy new year to everybody else. May 2025 bring health to everybody on this call and everybody listening, and joy to everybody as well.
Speaker 1:I will cheers to that, cheers, cheers. If you liked this episode, please rate, review, subscribe and, even better, share it with your friends. Cheers.
