Robin & Stacey's 5-Year Pouchiversary episode!

Five years post J-pouch surgery sounds like a finish line, but our bodies do not read the brochure. We’re together in person for a live catch-up with our favorite recurring guest and IBD Registered Dietitian, Stacey Collins, and we get real about what changes with time and what still blindsides you when you live with a J-Pouch after IBD.

We talk through the wins that matter most day to day: more capacity, less urgency, and the quiet joy of doing normal things without panic, like waiting in line, taking long road trips, hiking, skiing, and traveling. Then we dig into the stuff patients whisper about but rarely get warned about, especially gas pain. We break down what it feels like, why it can block emptying, what actually helps (yes, including “toilet yoga”), and why travel, altitude, fasting, dehydration, carbonation, and food additives can make symptoms spike.

We also cover the scary gray zones: when symptoms feel like a Crohn’s flare but turn out to be SIBO, why antibiotics may be part of J-pouch life, and how to rebuild the gut microbiome afterward with food you can tolerate. Finally, we get blunt about the “surgery is curative” myth, the need for ongoing monitoring (iron deficiency anemia, B12, folate, fatigue), and what better post-op care should look like, including pelvic floor physical therapy and honest expectations at 3, 6, and 12 months.

If you found this helpful, subscribe, share it with someone who needs it, and leave a review. What’s one thing you wish your care team had told you before surgery?

Links: 

• Stacey's website- sign up for her waiting list, find resources
• Stacey's additives guide
• Stacey's oral rehydration guide
• Info about SIBO- Mayo Clinic
• Info about the ENIGMA Study- National Institutes of Health 
• Info about the ENGIBMA Study from Stacey's website

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Transcript

Live Reunion And Five-Year Check-In

SPEAKER_01 0:00

Hi, I'm Alicia, and I'm Robin, and you're listening to Bowel Moments, a podcast during real talk about the realities of ITV.

SPEAKER_00 0:15

Hi, everybody. Welcome to Bowel Moments.

SPEAKER_02 0:18

This is Robin. Hello, everyone. This is Alicia, and we are so, so, so excited to be physically present with each other. Number one. And also to be joined by our dear dear friend and guest favorite guest for the show, Stacey Collins.

SPEAKER_01 0:33

Stacy, welcome to the show. Thank you. Favorite guest. Wow, what an honor. Sorry, everybody else. Sorry. No, I'm not sorry. We're just hanging in Colorado, just the girls.

SPEAKER_02 0:44

That's right. That's right. Yeah. What a treat this is. I think we've been all so excited to record this together. But guys, I think you know my very first, very unprofessional question is what are you drinking, Stacey?

SPEAKER_01 0:56

I'm drinking a cocktail made by cocktail wagers. Extraordinaire. Extraordinaire. Alicia. And LinkedIn just endorsed her as quality candidate for this position. So I do think LinkedIn Gods, if you're listening, I know an excellent cocktail server. And I can't exactly tell you what it is 100% because I already forgot the name of it. But it's a Mexican mule. It's a Mexican mule.

SPEAKER_02 1:20

And as am I, I am also drinking a Mexican mule because obviously if you're making one, you might as well make two, right? Robin, what about you?

SPEAKER_00 1:26

I am drinking hot chocolate. Yes. Because as you heard Stacy say, we are together in Colorado and I am in Florida most of the time. So it's a little chilly here. And I'm taking advantage of drinking a warm beverage. Exactly.

SPEAKER_02 1:39

Well, guys, cheers. Cheers. Again, as I mentioned, like this is our first live live episode, guys. So I'm very interested to see how this works because yes, it's gonna make editing different. Very, very different. But the other thing, the reason we wanted to do this episode is not just because we want to hang out with each other, but also you guys are five years into having a jay pouch, which is a crazy milestone.

SPEAKER_00 2:05

It is a crazy milestone. I can't believe it. I told it to I told Matt earlier this week that that's what we were talking about. And he was he's like, five years. It's only been five years, or it was just a weird thing to try to post.

SPEAKER_01 2:17

Yeah, yeah. Our J pouches are going to kindergarten. Yes. Wow. Oh, okay. No, she's saying it and then you know I was like, I don't know, Robin, that sounds like a prolapse.

SPEAKER_02 2:30

It seems like a bad thing. No, no, no, no, no. I'm not a medical professional. I know when we did your one year episode that there was a lot of learning that had happened. And I know just in conversations with both of you, both of you, the learning has not stopped in the four subsequent years after. So we're going to revisit our conversation around what have you learned from having J Pouch and kind of where are you at now? Because obviously with everything in life, there are some ups and downs. So I am going to start out by asking you when we knew we were going to do this topic, what was the first thing that popped into your brains?

SPEAKER_00 3:02

When I knew that we were going to do this topic, one of the first things that popped into my brain was my body is still adjusting to living with a J pouch. There's not a line where it's like, okay, now you're healed, now you're fully recovered, now this is your new normal. There isn't that yet. I think it takes many, many years, many more than five years, for your body to settle in to what life with a J Pouch is. And just like with IBD, there's always going to be ups and downs. And I wanted to make sure that we talked about that because I think people expect there to be an endpoint. Like I am recovered from surgery now. Period. Period. And that is that is not the case at all. What about you, Stacey?

SPEAKER_01 3:46

I think that's a really good thing to say because I think I felt that, but I wasn't sure how to articulate it. I was like, we go, wow, okay, what have we learned?

SPEAKER_02 3:55

We were talking a little bit earlier today, kind of about what what are we going to discuss in this episode. And I think I also had an epiphany with both of you all when I was like, but wait a second, we're talking about like stool consistency and like about how, like, hang on a second. What I would consider to be probably what I would expect from a J pouch if I were in your position is not at all what you guys are saying, and about how like an actually probably mine would make it an emergency. So, like, you know, good to know. Because I probably would have thought, oh, everything's fine. And meanwhile, I'm like, you know, going to explode my J Pouch. So yeah. Good thing I don't have one. So good thing. Good thing. So okay, you said ups and downs. Yeah. Can we talk a little bit about that? Yeah. Okay. Let's start with pros. What has been the stuff where you're like, great, this is the thing that like I've seen improvement from year zero to year five. What did that look like? What did that feel like? Is it that there's some learning there or is it physical stuff? That's the other question.

SPEAKER_01 4:51

I think physically it's nice to feel that my J Pouch can hold more volume. And there can objectively, you can measure measure that with time. So, for example, when I first got my J Pouch, I was like, wow, I was able to wait 45 minutes. That's wild because with ulcerative colitis, oh, she could never. She could never. And now it's like I will feel the kind of this urge, the sensation, and then I'll be like, okay, I'm gonna get to my destination or I'm gonna do whatever I'm doing. So much time will pass, and I'll even like kind of forget. And then I'm like, oh yeah. And that's quite a flex. So physically, that's been really cool to witness. And just being able to retain more volume without it causing any sort of pain has been really nice. Yeah.

SPEAKER_00 5:36

I would say physically for me, similar to Stacy is the realization that I can hold it longer while I wasn't in the same situation that Stacy was prior to surgery. There still was this sense of urgency more often than not. And now I'm driving a car, I'm taking a long road trip. I'm like, oh, I might have to go to the bathroom. And then the next bathroom's not for an hour away. And I actually think, oh, I can make that. Yeah. Which is revolutionary. Revolutionary. Who thought I could physically make a decision to hold it for a whole hour and not be concerned

Why Healing Has No Finish Line

SPEAKER_00 6:10

about having to stop emergently? Like that's a pretty good feeling. And I think I've talked about it a lot on the show. So I didn't go from a colon to a J pouch. I had already had my colon removed. Now, 26 years ago. So I was living with small intestines connected to my rectum. So the difference in experience there, it's very hard to describe because I'm, I would love to talk to somebody else about this, but I'm the only person that I know that has had an illial rectal anastomosis and then went to a J pouch from that. I thought going into it that I was already prepared. Like my small intestines were already prepared. Like I had been living without a large intestine for 20 years at that point. So it's going to be fine. And the the change has been a down, but also an up because I can hold it more. So I don't want this to be like the down part of it. But learning the differences between that has been an eye-opening experience, I guess.

SPEAKER_02 7:07

I imagine there'd be a psychological component to this as well, because it's like even when you're talking about, you know, preparing for a road trip or going places about how much of your brain went into, okay, I have to not eat, not drink, or do certain things, or know where the next bathroom is or prepare. And now it feels like you haven't had to put as much thought into going and doing and everything like that. But that is a psychological hurdle, like getting your brain used to, you don't need to go to the bathroom every 45 or 45 minutes. You know, that's the other piece I would imagine. Yes. It's hard to trust.

SPEAKER_01 7:40

Yeah, it's hard to imagine.

SPEAKER_00 7:42

It's very hard to trust.

SPEAKER_01 7:43

It's so nonlinear too, because you have one bad day. And I think your brain is kind of trained, at least mine was before J Patchland, to be like, oh, the next shoe, it's dropping. Yes. And so it's been an interesting adjustment. And I I've taken like so much investment in collecting all of these experiences, like, oh my gosh, I was able to just drop things and meet Robin and Alicia in the mountains. And oh my gosh, I was able to plan a trip in advance without thinking, is my body gonna make me cancel out? Am I gonna have to go to the hospital? Like I was for so many friends' bachelorette parties or graduation. And so it's been a learning experience to just see the world open up, which has been riddled with grief, I would say. And also just like a lot of delight in the smallest of things, like we were talking earlier. I was like, gosh, I just love getting to wait in line for things.

SPEAKER_00 8:34

Yeah, just without having to worry about it.

SPEAKER_01 8:35

Right. It's like not a stressful experience anymore where it used to send me straight into a panic attack. For as much as there are highs, we also want to make sure we're acknowledging that there are that this is a not a linear, like you said, this is not a linear. So there's gonna be some days where it feels like some backtracking, it feels like your old self.

SPEAKER_02 8:53

So, what are your pieces of learning from this that are perhaps related to lows?

SPEAKER_00 8:59

Hopefully, celebrate the highs, but learn from the lows. Yeah, I don't drink out of straws anymore since the J Pouch. We have talked about on the show, I think Stacy and I have talked about it, and I've talked about it with other people, the gas with the J Pouch. Wow is existential. I don't, yes, it is existential. I don't know if I will ever get used to it. I don't I don't know if that's possible. And I actually got to thinking about it too when Dr. Wong was on, both times that Dr. Wong was on, because we talked about gas and the pain that you experience with gas and the research that she was looking at, where there's not even a lot of gas, but there the pain is more than what would be expected from the amount of gas. I can assure you that there is a lot of gas because I have to pass it. So it's not as an instance of my body telling me that I should be feeling this way because something's going wrong. There is actual gas that's being trapped. And that has been an interesting learning process because the gas presents itself in a couple of ways. Like it can block me from being able to go to the bathroom. Yes. It feels like the gas has like formed a seal and stool will not exit. And so, in and then I'm doing what I've mentioned on the show before, toilet yoga, trying to empty the pouch, but I can't because the gas is blocking the way. And then there is also gas that I told Stacey is fine, where it feels like there is a family on an amusement park ride just going in and out and saying, we as they're traveling through my intestines. And that's like little bubbly gas. And that's fine because I know it's moving and it's going to make its way out and exit without being painful. And then there is gas that moves, but it just feels like there's sucked a large amount of it that wherever it goes, it causes pain. And for both the block and the large amounts of gas that are moving but slowly the next day, the next two days, sometimes even the next three days, I feel like somebody has just punched me in the gut multiple times. Like it's so tender. It feels like I'm bruised on the inside. And so that has been an interesting process of trying to figure out how do I manage this? How do I work through the pain? Can I push through this? And the answer is almost always no. I can't push through that. And so that has been a lot of conversations with Stacy. Just like, have you experienced this? What have you done? Heating pad, drinking hot tea, hot water with lemon, phaseime.

SPEAKER_01 11:35

The 500 milligrams in particular. Yes. Anything less won't work. Won't work at all. Honestly, with 500 milligrams doesn't always work. No.

SPEAKER_00 11:42

So you have to take more. And also with the phaseime, I rip it open and either put it in a glass of water or just squirt it right into my mouth so that I don't have to wait for my body type to digest the gel around it. Now it is not working as well for me now as it did when I first started using it. But again, I started drinking hot water, hot tea, using a heating pad, doing lots of yoga, happy baby, the side twists, like anything like that to help move things around to get the gas to pass. That has been one of the biggest challenges, but I feel like I'm starting to learn what needs what remedy. Yeah. That was surprising for me. That was just the pain that came along with the gas.

SPEAKER_01 12:27

Yeah. Having a full colon before the surgery to going to have no colon, it feels like there's reduced capacity for things to expand. And it feels like things are kind of being stretched out in a way that I did not consent. Sometimes that can be really debilitating, but the debilitating aspect is so different than it was with UC. Like with UC, it was like, I physically have to, you know, I would love to be in a coma, just someone taking me out back. Yeah. But with this, it's like you're in so much pain, but you're learning that it actually means that you need to move. Like even though you would rather be doubled over with a heating pad, if you can get some of that gas to mobilize, you're going to be immediately relieved. Yes. And Robin is correct, where you like days later you might be a little bit sore. It almost feels kind of like a fluy sort of stomach ache, I guess.

SPEAKER_00 13:25

I feel I feel very tender on the inside.

SPEAKER_01 13:28

Very, very tender. Yeah. Like, yeah. And it's interesting because I think a lot of people would hear this conversation with patients and think like, oh, this is real hypersensitivity. Maybe this is a touch of IBS. And I just think there's a lot left

Freedom Returns With Trust And Grief

SPEAKER_01 13:40

to be explored listening to patients and being a little bit more curious about this because I just don't know what it is exactly.

SPEAKER_00 13:46

And I feel like we had our large intestines removed. So jumping to that conclusion feels very premature.

SPEAKER_01 13:55

I would agree. We went through a lot there. Yeah. Yeah. So that's been a fun learning curve. It's kind of, I guess, like if you were to have an infant and be like, why is this thing crying at me? Yes. Yes. And now you're like, oh, you're hungry. And oh, that means you are about to, you know, throw yourself on the ground. And like you're you're kind of learning the language of the JPOUS, which has gotten easier in the five years. Yes. I'm curious if you've noticed a trend in what makes that type of gas. Like because you were talking about straws, definitely you get the gurgles. Yeah. But is there any correlation that you've put together for this? Or is it just kind of like, ta-da, today I'm gonna be a jerk? Personally, I have figured out that there are very particular, like, I think there's a lot of opportunity that needs to be explored around food additives and how that's metabolized in a JPouch microbiome because it's a very sensitive tissue. And you're asking that tissue to stunt double as a colon. One thing that came up earlier is that we are at altitude. We're up in the mountains, right?

SPEAKER_02 14:56

So like air travel, altitude. Like, are there things like that where you're like, okay, I can kind of anticipate that I'm gonna get on an airplane? Airplanes are hard for all of us. We all get a little toots. Also, toots, you've been trying to them, yes, yes.

SPEAKER_01 15:09

You know, so kind of we it might be that we know that. And so when we land, it's like, okay, well, that kind of makes sense. Definitely air travel. Personally, for me, fasting makes it worse. Yes. And what I've seen in working with patients is that a lot of times, you know, it's like the one thing you can control on a day of travel where you can't control anything else unless you have a PJ. None of us do. If you're listening to this podcast and you do, you're welcome to find me anywhere. But none of us here at this table presently have a private jet. And so we aspirations. Yes, yes. So the only thing you can really control in your travel day is like, well, I'm just not gonna eat because I don't want to be in more pain. But really, what that kind of results in in all my work with J Popters, listen to me, I don't want to be a clinician, is you you don't eat, you get on a plane, you're at risk for dehydration, yeah, and you're feeling that, you know, like Robin described the family on the coaster. If you're going up in altitude, you're gonna feel those gas bubbles falling down. If you're going down, you're gonna feel those gas bubbles coming up, and you might have to burp a little bit more. Like you feel the gas mobilizing through your body while you're on an airplane, you get more and more used to it. It gets less and less alarming as time goes by. Smoke alarm, there's no fire, everything's okay. But if you fast and then you get off the airplane and you're dehydrated, you're already at increased risk for constipation, which feels impossible with a J Pouch. But also, like if your J Pouch isn't set up to function optimally and then you're getting to a new location, that could certainly set you up for a lot of like uncomfortable gas pain. So the best way to avoid like gas when travel is actually to hydrate really, really thoroughly the day before. And to about an hour before you get on the plane, make sure you have a little bite of something. And that can look different from person to person. But that's like you can always anticipate there will be gas. You're actually gonna make it worse if you fast, getting off light. It's like what Robin said like that gas, it feels like a seal or something. Like things won't move through, and you're gonna be rolling around in your hotel room doing happy baby, which it might do anyway.

SPEAKER_02 17:14

I thank you guys very much for demonstrating this for me, by the way.

SPEAKER_01 17:17

Girls here today because it was actually very helpful, but also pretty funny. We didn't we rolled around on the ground. That's a bonus for for everyone. Unfortunately, I did not get a recording of that or pictures, but you know, that's okay. It's an opportunity for the future.

SPEAKER_00 17:30

I would say, besides, like, well, fasting at all is not good for me with a J Pouch. And that part is hard to change because previously, oh yeah, I didn't want to wake up and eat in the morning. I would go a long time. And now if I do that, it it has the potential to make the gas worse. So I don't use straws anymore. I try to eat, like I try to do a smoothie in the morning specifically because then I can have something, it's not full on food, it eases me into eating. I have significantly reduced carbonated beverages. Um, and when I say carbonated beverages, I've really just lived on sparkling water. So I also have different brands that have different levels of sparkle, if you will. And so I know that I can have Perrier more often than any other brand because it the carbonation is less.

SPEAKER_02 18:26

Yeah. Or maybe the bubbles are bigger and so they move easier or something. Yeah, however, that works.

SPEAKER_00 18:31

But it's it's every time Perrier and then Topo Chico, which unfortunately has the perfect blend of carbonation to sparkling water or to water, sometimes is too bubbly for me. It's my favorite. I know. Tobo Chico is big fan. Tobo Chico stand. Listen, Tobo Chico, if you listen to spots or so, for food-wise, like if there's something that you eat every time, I do much better if I'm preparing food at home, which it works out really well for me when I'm not traveling because I live pretty rurally and there's not a lot of opportunity to like eat out, get fast food. It's very inconvenient. So preparing my own food at home makes that a lot easier. But I do travel a lot for work. So I do find that I'm more symptomatic when I start to have to eat out. Stacy and I were talking about this earlier, trying to stay away from chains, you know, maybe more local restaurants where they're actually preparing the food in-house, using less like industrial mixes, processed foods to prepare their food. So um, that makes a difference too.

SPEAKER_02 19:32

Yeah.

SPEAKER_01 19:33

That additive side of things. I know we were talking about since you've been traveling, it it's yeah, a lot more pre-made salad dressings or things that you've been having on your food. And that has perhaps contributed to some of your discomfort that we've seen since we've been here. But you also mentioned that you found a resource on Stacy's website that was particularly helpful talking about additives, right?

SPEAKER_00 19:52

Yes, I did. So I am very lucky, and I do not take that for granted to have Stacy in my phones and just as I select. I'm not gonna lie, I feel very fortunate that we have gone on this J pouch journey together, like having our initial surgeries within four weeks of each other, and then our last surgeries very close to each other as well. And I started explaining to Stacey some of my symptoms and still like getting up at night and going to the bathroom multiple times. By this point, I should only be going one or two times a night, max. And we started talking about what kind of salad dressing am I eating, what kind of sauces, what kind of this? So she recommended that I just start making my salad dressing myself, which is the easiest thing to do. You don't have to be a former chef like me. It's so easy to make salad dressings at home. So I started doing that. And I already cook a lot of my food and I started prepping a little bit more on the weekends so that I wouldn't be doing things on the fly during the week. And that had an immediate impact on my quality of sleep and not perfect, but it I saw a difference. And then a little while later, Stacy's like, so I created this resource for people with J Pouches, all about additives, and it's available on her website, and it can help anybody with a J Pouch know what to try to avoid. I mean, as much as you can. Like I still eat ranch dressing that I don't make at home, but all of my other oil and vinegar-based salad dressings I make from scratch, and it takes literally less than a minute to do that.

SPEAKER_01 21:20

Well, that's the goal is making your J pouch work for you and not the other way around. I think we're used to being slaves to our body with IBD.

SPEAKER_03 21:26

Okay.

SPEAKER_01 21:27

And it is a learning curve to learn, like, oh, I could

Gas Pain, Blockages, And Fixes

SPEAKER_01 21:30

do this and actually like sleep one more time during the night. Well, that's gonna buy me an extra hour of sleep. Easy.

SPEAKER_00 21:36

So yeah, I mean, hate to to plug the resource that's available that you created for people, let's plug it.

SPEAKER_01 21:43

It's actually a really great resource. But what I have seen if it really is those little things like making swaps, for example, like artificial sweeteners, so hard on a J pouch. Whereas yesterday Robin was like, I had a Mexican Coke, and that's actually gonna be my More tolerated. Am I telling everyone to go out and pound some Mexican Coke? No, let's calm down, everyone. But if you're choosing the Coke because you think it might be better for you with a J Pouch, I would be very curious about that. Just based on a lot of truly anecdotal experience that we have with patients, but also the Enigma study, which is specifically about specific additives in IBD, we'd need more research on how this would translate to the J pouch microbiome and J pouch-related inflammation. That's what we have to do. Like we can't wait, unfortunately, for science to catch up whenever people are miserable today. And so these hex are just like very minimal things that are not time intensive. You know, it's okay if you don't live somewhere big and fancy. Like Robin's able to make things from home or shop locally as much as she possibly can. No, everyone's circumstance is different and life is hard for a lot of people. And I know that, you know, if a family is picking a big chain restaurant, I will certainly be up one extra time with my J Couch that night if it's for dinner almost every time. Yep. Just because of the gas, and it's really hard to alleviate the gas with a J Couch. So in that regard, you know, if you're laying in bed, you might have to get up simply because the gas is worse. And anything you can do to minimize the gas isn't important. Did anybody talk to you guys about gas when you were getting your surgeries? Was there something absolutely not? Okay. Oh, Robin, thank God. I love that. She's like, I'm so grateful to have gone on this journey through Stacey. I'm like, or with Stacy. I'm like, Ditto, the feeling is mutual because she's like four weeks down the tunnel with a flashlight. And I was like, hey Robin, you didn't tell me about this. And she's like, Oh yeah, that gas is something else now. I was like, wow, are we dying? She's like, I don't think so.

SPEAKER_00 23:45

I thought it was just me though, because nobody told me about it. So I thought it was just a symptom that I was having. I wasn't told to expect it. So when you said that, I was like, Oh yeah, this is this is a thing. This is a thing. This is a thing. It's existent. Yeah.

SPEAKER_01 23:58

Like that's the only way I can describe it. Yeah. It's it's pretty significant. Yeah, it is. You mentioned hacks at some point and you're talking about like trying to find hacks as you're eating, eating out, eating with the other people. What are some other hacks you have that you would recommend?

SPEAKER_00 24:10

My first one, because I did not bring it this time and I want to kick myself in the ass, is a heating pad. I brought mine. And I actually have two heating pads at home because I traveled and didn't bring it with me and ended up having to buy one. I always, always, always have a heating pad, except for apparently this time.

SPEAKER_01 24:27

Other hacks. Hydration, most important with a J Pouch, you might, I mean, another resource I have on my website, it's free y'all. And it's all about oral rehydration solutions because if you have hypertonic fluids that are things like apple juice or Gatorade, even, you might actually empty your J pouch more and leading to more dehydration than you would actually bargain for. So it's really important that the sugar and the salt be in like the correct ratio. Is it pleasant to drink? No. But you know what? Neither's dehydration. So let's let's be good to ourselves.

SPEAKER_00 24:58

I have to have a caveat here. I cannot use rehydration solutions. None of them at all. I am straight to the bathroom, in the bathroom. Yes. You don't remember us talking about this when you were like recommending so many different ones? I do, but I cannot drink so any of the like liquid I need.

SPEAKER_01 25:15

So nothing. But did you make anything yourself? Did you do any clear pediolite? I drink pickle juice. Okay. Okay. Honestly, it sounds great. It slaps. Especially if you freeze it with some toothpicks. You can do or we have you can do catering and add a little bit of salt to it and a little bit of baking soda. I will try that. I have some recipes in there. The commercial things can be hard, and homemade is great stuff with the JPOW. But I do have lots of homemade recipes in that resource too. I mean, they're not all for me. They're from the University of Virginia, specifically Carol Reese Parrish. She deserves all the credit and glory for that for sure. Yeah. Okay. Thanks, Carol. But I suppose if you think about pickles, they're made with sugar and salt. And so you can freeze those up. That's what actually I do whenever I prep a lot. I'll like freeze them in little ice cubes and use them as little popsicles.

SPEAKER_00 26:02

I love it. I'll start doing that. I haven't done I just open up a jar and drink pickle juice.

SPEAKER_01 26:07

I just don't know if I can. I don't know if I'm built. I do love pickles. But this is the thing. IBD is different for everybody. Everybody says it's different for everybody. And if Robin were if Robin were seeing me, we would have to find some sort of oral rehydration solution that works really good for her if she's like super high risk for dehydration. I just want to be clear. Like, just because it doesn't work for you doesn't mean there's we're out of solutions. That's right. Yeah.

SPEAKER_00 26:29

But that's also why I drink pickle juice.

SPEAKER_01 26:31

Yeah, we like it. Love it. Does it have to be pickles or could it be olives? Like anything pickled gold? Honestly, I don't know the answer to this question. Sorry. But I can look into it because now I'm curious.

SPEAKER_02 26:41

I know. There's lots of other things that are like brind. Yeah, I don't remember that I would drink olives.

SPEAKER_01 26:45

Specifically, I mean you don't like a martini. I don't.

SPEAKER_02 26:48

I know me neither. So I say that I say this as if this is some horrific thing and like gross.

SPEAKER_01 26:53

Okay. What you learned from Bow Moments today is Alicia is recommending martinis for oral rehydration. Trust me, I'm a medical profession. She's a scientist. I'm a scientist, guys.

SPEAKER_02 27:04

Okay. All right. So good travel hacks. Your travel kit, Robin, probably consists of heating pad phaseine.

SPEAKER_01 27:10

Lidocaine wipes. Lido lidocaine wipes. Yeah. Specifically preparation age, the ones that cost as much as your college tuition. You should probably just buy them just in case. Do I use them? No, they're like an emotional support thing.

SPEAKER_00 27:23

I also have chalmaseptine. I was about to say chalmaseptine. Okay. I use cottonell butt wipes. Cottonel. They are my favorite. They are the best. They are not fragranced. And I have to bring those with me, guys, because toilet paper in hotels can be sketch. And if I wipe myself a couple of times with sketchy toilet paper, that I have butt burn for the rest of the trip. Yeah. So I bring what wipes.

SPEAKER_01 27:48

Obviously, as Americans, we should be riding the streets about a lot of things right now. And in addition, the quality of toilet paper for what we are paying in hotel rooms is unacceptable. Indeed. And I will die on that hill. Honestly. A bidet is. Yeah, you should install one in your house. Yes. And it's not hard to install one if you're married to an engineer. If you agree, it's also like women in STEM, we can do this. There's YouTube University, and you can buy things from Lowe's that just connect right up to your little toilet. And if you don't have a bidet and you also have a J pouch, I just don't even know what you're doing. What are you doing? It could be just like a little squirt bottle that you get from any sort of online retailer, and you could take that along with you on your journeys too. I do that a lot. And game changer. Yes. Also, squatty potty. If you want to sponsor this podcast, you have like a foldable squatty potty and you can just like pop it into your suitcase. I bring that with me everywhere I travel. A lot of people are like, I don't notice. It doesn't make a difference. I think for me, it just gives me like another option to be in another position, which is everything with a J pouch.

SPEAKER_00 28:54

I'm bringing comfortable clothes in case I am not feeling my best. Absolutely. I cannot wear, no matter what I'm traveling for, if I have discomfort in my abdomen, I cannot wear hard pants. That is not happening. Yeah. Who wears hard pants on an airplane anyway? Well, I'm talking about just travel. This is travel hacks. Okay. So like I'm it's in my I'm having comfortable clothes and my pants on any sort of travel.

SPEAKER_01 29:18

I've seen people I've definitely done it before and regretted it. No, I just I feel like there's just no point. The ribcage Levi's are some of my favorite jeans, and I wore them on an airplane one time and I was like, wow, do I hate myself? Maybe a little. And I didn't do it again, so I like myself a little bit more. Another good learning thing that we were talking about is like Robin travels so much for work. And if you wait for all of the stars to align with your J pouch, you're gonna be waiting a long time.

SPEAKER_00 29:42

Yes.

SPEAKER_01 29:43

If you wait for the perfect day before adding in a new food, or you wait for the perfect day before you decide to live your life with your J Pouch, you're gonna be waiting so long. And it's really important that you try to live life with your J Pouch as much as possible and just know that it is hard, especially in the beginning. And it is nonlinear. But I mean, Robin would not be able to actually make it to work to the airport if you were waiting for a perfect day. No, I would not. But also, Robin and I are kind of the personalities where we're like, well, screw the world, we're gonna live our lives. That's right. And we're in therapy. So there's some things we're relearning as you have lived with your J Pouches for a little bit, including stuff like, is this a flare or is this really terrible gas? Or is this a flare or is this what Robin has discovered? The beautiful, wonderful new friend you have called SIBO.

SPEAKER_00 30:32

I've talked about it a little bit on the show, the SIBO, because we've had some guests that have talked about it, but I had SIBO for months and months and thought that I was in a flare again, and was constantly communicating with my GI team through the patient portal, and I got a scope, and I got a capsule endoscopy, and I got a blood work, and I mean I had test after test after test, and everything was quote unquote, they almost changed your meds. Looks good, like everything looks good. And I got to the point where I was going to the bathroom seven times a night. No, a night, not all day, not in 24 hours, like seven times a night. And come to find out after they did a stool sample and tested for bacteria, I had like three or four different kinds of bacteria. It was determined that it was small intestinal bacterial overgrowth. And I was given two very strong antibiotics for a two-week course. And Bob's your uncle, I was better. I was, you know, not all those symptoms. I was better. So the fun, fun thing about SIBO is that it will just come back willy-nilly whenever it feels like it. And so about six months later, I got it again. This time I just messaged the doctor. I'm like, symptoms are the same. This I waited two weeks before I messaged you to make sure it wasn't just like random gas or random abdominal pain or random going to the bathroom and got on a week's course of antibiotics and knocked it right out again. But so SIBO just comes back whenever it wants to. And while I am not a medical professional, it is my understanding that this is what happens when you have a J pouch now, because as Stacy has mentioned a couple of times on here, your new JPouch microbiome, the bacteria, it doesn't have any place to go. And it just keeps reproducing and then it spreads into your the rest of your small intestines. And you have to have antibiotics to take care of it.

SPEAKER_01 32:31

That's right. And I think that is a good point on the relearning because a lot of times with IBD, like we are very well aware that antibiotics are a risk factor for the development of IBD. And so it's like, wait, why, wait, wait, wait, wait. You gave me the surgery and now you're giving me antibiotics. Why? Why? Right. And the first time that was prescribed to me after having a J Couch, I felt like I had a little bit of uh like a UTI. It felt like a really deep ache. And I just noticed that I was waking up a little bit more often than not in the middle of the night. And I just felt kind of like achy, a little sort of fluy, but it wasn't, I don't know. It was it wasn't like anything I had ever experienced with UC. So I was like, what is this? And then ultimately it was like, oh, it's SIBO, we're gonna give you some antibiotics. And I was like, wait, I don't want antibiotics because apparently that's how you can get

Travel Food, Additives, And Hydration

SPEAKER_01 33:20

IBD. And so it was a learning curve to be like, no, this is actually just like needed to make sure that your microbiome is able to start from a clean slate. And that's honestly a really good opportunity to think about using food as fertilizer for the microbiome and really kind of repopulating a nice, healthy, beautiful garden of your your J Pouch gut microbiome once you're off of the antibiotics. But it that's a learning curve to come to a place of acceptance that you have another recurring thing. Well, and I'm gonna ask you to put your professional hat on for a second.

SPEAKER_02 33:48

So switch to water.

SPEAKER_01 33:50

So Stacey, as a dietitian, when you are working with somebody who they have SIBO, they're gonna need to go on antibiotics or they have something else that you know that you need to go on antibiotics. Can is there a way to repopulate that good bacteria while you're on antibiotics? Because it's you know kind of seems like antibiotics just wipe everything out.

SPEAKER_02 34:07

Good, good, bad, ugly.

SPEAKER_01 34:08

Yeah, that's a good question. While on antibiotics, so it depends if you're on a broad spectrum or like a more targeted antibiotic. And if you're on a more targeted antibiotic, this is just an easy question to have in conversation with your doctor. You can do more to repopulate your gut microbiome while you're on a narrow spectrum antibiotic. If you're being treated for SIBO, usually it will be more broad spectrum. And in that case, really there's not a whole lot you can do to keep yourself A more comfortable or even B like in more support of your gut microbiome because it's true that like things are going to be wiped out as you're on that medication. But if you're on a more narrow spectrum antibiotic, that's when it's really important to think about maybe adding in some, you know, nice Greek yogurt or something that's already fermented. Fermented and fermentable carbohydrates are two different things. So fermentable carbohydrates will actually cause bacteria in your gut to kind of chew those substrates and as a byproduct produce gas. And that can be really uncomfortable while you're on antibiotics. So if you're on a narrow spectrum antibiotic, that's maybe one time when you think about like improving your exposure to fibers that might be a little bit less fermentable and also like probiotic sources. So maybe a nice miso soup or fermented vegetables, things like that. But really, in the case of SIBO, you're gonna be on a pretty broad spectrum antibiotic. And in that case, I'm like, okay, that's what I tell my patients. I'm like, last day of antibiotics is Tuesday, July 1st. Okay. That's when we're gonna think about really adding in a nice, lovely smoothie and using food as fertilizer, giving yourself as many anti-inflammatory promoting foods as we possibly can. Lots of diversity, lots of variety in a way that feels safe and accessible in your body, which obviously looks different for each and every person with IBD, much less with a J Pokch.

SPEAKER_02 35:56

But so, like some good fibers, some probiotics, things like kimchi and yogurt that have those good.

SPEAKER_01 36:02

Yeah. Yeah. Not everyone's gonna tolerate kimchi, but yeah. I think the kimchi is a very can be a divisive food. Yeah. So can Greek yogurt, a lot of people are like, no, I'm lactose intolerant. Lactose is actually fermented out. That's what makes it a probiotic. But I totally understand like everyone's variable ways of sensitive to lactose. So it can be tricky to find one that works for you. But Stony Field and White Mountain Bulgarian and Faye, those are good brains if you're really struggling with lactose.

SPEAKER_02 36:32

Yeah, okay.

SPEAKER_01 36:33

Lower fat will be better with a J patch too. Okay.

SPEAKER_02 36:35

Also, the other thing is we're gonna acknowledge that both of you were misdiagnosed with ultra difficolitis and now have been diagnosed with Crohn's, correct? High fives across the table. There we go. So really sure where to go from the same. If you're not laughing, you're crying. But I know the historic lore for people who have had ulcerative colitis is that having like all like having your colon removed is quote unquote curative, but who news? But it does not seem like that's the case. We think we've figured out, but obviously this is a slightly different scenario since you guys don't actually have ulcerative colitis. However, I think there is this idea that it is curative, right? Like I think people are like, I'm gonna have this big surgery and then I I won't need anything else, right? But but that's what y'all have found in these five years.

SPEAKER_00 37:27

In these five years, maybe the next five years. Maybe. I mean, I think that first of all, IBD is systemic. Yeah. I mean, it manifests in your gastrointestinal tract, but there are so many, so many extra intestinal manifestations. That tells me, a non-scientist, not doctor, not researcher, that IBD is systemic. Why else would I be having extraintestinal manifestations if it's not systemic? So how can removing an organ cure me? I mean, I still have the rest of all of my systems. My job. So I feel like if there is anyone still saying that there is a cure or that that removing your colon is a cure, that a JPOLC is a cure, I'm so sorry. I question their integrity, quite frankly, because it's research has shown that that is not true. And even if research hasn't shown that, patients, yeah, actual experience has shown that that's not true. And it's not just one or two patients, it's not just the outliers. It has happened time and time and time again. So if people are still toting this as a cure, I just I I question their integrity as a medical professional. Right.

SPEAKER_02 38:43

So if somebody has had JPOD surgery and their doctor still wants them to be on a biologic or on a medication that a Jack or a TIP or whatever kind of what we're calling them now, yeah, that that's not a failure.

SPEAKER_01 38:55

No, my gosh, it's not like your surgery didn't work. No, absolutely not. We're living through an active paradigm shift with this. Yes. And I believe Mount Sinai is doing some research about like prophylactic treatment of different medications in people who are having JPOUC surgery. And so we're like in an active time of learning much more about this. But when I was in LA and I learned that I was going to need more heavy hitting medication after going through these surgeries and having marched through so many heavy hitters with medicine, I was like, are you kidding? And on that day, I drove to the beach, I got myself a pizza, and I cried on the beach and I called Robin. And it was just a whole moment of acceptance of like, oh, I'm gonna have to keep accessing this healthcare system that I never wanted to in the first place. Like I'm gonna have to continue to identify it as a patient on my worst days, and that's not how I want to spend my worst days. And so it really was a moment of like, good God, are you kidding for me? But you know, surgery is a treatment option, and that's the thing, like it never should have been marketed to me as a cure. And given the spicy level of inflammation that my body had sustained for so many years, sometimes I'm like, you know, I probably would have been a better candidate for a permanent iliostomy than for a J Pouch if I wanted to not be a person who accesses the healthcare system quite as often. Now, do I regret my J Pouch? Absolutely not. I'm thinking before every day, but I think that that kind of illustrates like there's no, like no one really gets a free ride with IBD. And none of these are easy decisions, and you can't predict the future. And that's what we want with this disease is we want control because we have none whenever this disease is so like middle fingers, we don't care. We're just gonna make you shut your pants all the time. And yeah, it's just hard. It's just hard. But I think we're living through an active paradigm shift where people are starting to market these surgeries as imperfect treatment options, and they can be really, really profoundly impactful in people's quality of life and their level of inflammation and in their level of dysplasia and cancer risk. They can be profoundly impactful tools. Are they perfect? No, and you still should be monitored. And for some people, they may not need medicine after this these surgeries. But for some people, like for me, who is coming into these surgeries, quite ill. I think had I been the same patient but 10 or 15 years down the pipe, the conversation would have been marketed to me completely differently.

SPEAKER_02 41:23

Yeah, I think that's an important thing to say that like we are living in such an active time of learning for inflammatory bowel disease. But absolutely, you know, that it is systemic.

SPEAKER_01 41:32

And so just doing one thing is not necessarily going to be the answer to everything. There are some people where, yeah, they they get on humera and they live amazing lives and nothing ever, they never need to do anything again. But then there's plenty of other people that we know and that we talk to that it's not linear, it's not a one and done, and that's the end of it. That's hard because I think having those moments of grief, you know, to be able to say, I've been through the ringer, I've been through so much.

SPEAKER_02 41:56

I thought this was going to be at least a plateau. Yes. And it's fucking not, you know, and I'm gonna go eat a pizza on the beach.

SPEAKER_01 42:04

It kind of feels like you're in a junkie booth.

SPEAKER_02 42:06

Yeah, yeah. Like somebody hit that goddamn bullseye and now you're down again. Yeah, yeah.

SPEAKER_01 42:12

Like, oh, good, there's no flexible. Yeah. But I will say that, like, you know, they were telling me that I had this surgery to improve my quality of life. And I was like, cool, cool. There are certain pleasurable aspects of life that are becoming harder, specifically, and I'll be explicit sex. Like, I feel like sex should not be this hard after these surgeries were marketed as an improvement in my quality of life. And I had gotten the point where I was talking to lots of different people, and so many women are choosing to just never have sex again after these surgeries. Like that really needs to be more explored, and it really needs to be like significantly attenuated, I would say. And so I kept going to these doctors and being this wheaky wheel, and I was like, hey, like you're telling me this is supposed to improve my quality of life. There's a pretty big quality of life that is significantly not improved. And I'm really grateful, just like, you know, I've got my back because eventually, like I will find the doctor who will believe me, who will collaborate with me. And I did, and it did take a long time. And frankly, it left it, it took leaving the state of Texas for me to find someone who would believe me in that specific way. And I want to be clear that I had some of the fan most fantastic GI doctors in the state of Texas, wonderful, lovely people, but like OBIN care severely lacking there. And so it's hard to understand who you surgically or medically belong to whenever you're having like various organs that are kind of like communicating with each other in ways that you had not hoped. And so I finally was like, Hey, pleasure is really hard to access after this surgery, and I need help. 12 days after taking Rin Vogue, I had a recto vaginal fissula that actually closed. Wow. So Rin Voke has been a tremendous improvement in my quality of life. I credit Rinvoke for a Me to live a really, really full life in addition to these surgeries. And I'm tremendously grateful. Like, would I have rather things gone differently? I mean, maybe, but like I live a pretty good life. I'm in the mountains today drinking tequila with my friends. So, like, not worrying about pooping my pants or bleeding out. Like, yeah. All things considered, I live a very good life.

SPEAKER_02 44:20

I think that's an important piece to recognize though, that it's your care is not just your gastroenterologist or not just your surgeon. It's both in this case, but also just sometimes it's good to get to another surgeon, even if you're not sure you need surgery yet.

SPEAKER_01 44:31

But that how are you finding the other people that are knowledgeable enough to get pulled into your healthcare team? And that is very difficult.

SPEAKER_00 44:41

I want to say this too. When I was going through that whole SIBO situation, where I thought I was, I mean, months, I knew that I was in a flarigan because I was having the gas pain. And the last time I had a Crown's flare that actually changed my diagnosis, I had pain, but it was a different pain. So I thought this was just a different pain that was indicating a different part of my gastrointestinal tract. Was one of the things that was happening to me, who, as a woman of a certain age, I was having hot flashes and night sweats, which are perimenopause and menopause, but also IBD, IBD, indications of flair for IBD. So I was having perimenopause slash menopause symptoms that also cross over with IBD symptoms. And also hormones affect flares. And so with my hormones fluctuating like that, previously my experience of men trading was whenever it was time for my period, I was experiencing symptoms. So like I had so many things converging at the same time. And I love my GI, but I was struggling with getting the answers that I needed. I knew that I could feel better.

SIBO, Antibiotics, And Microbiome Rebuild

SPEAKER_00 45:50

I knew I should be feeling better. I knew that something was wrong. And so it took so much more effort on my part than it should have for me to get the answers that I got. And like Stacey, I have my back. As long as I have the energy to actually take action, I know I have my back. And I had already started looking for a new GI because I am not going to sit there for years knowing that something's wrong and not having somebody listen to me. Right. We're already living borrowed time. I'm not, but fortunately, because I do love my GI and she is the person that she is, you know, she reached out to me, did different tests. I found out I had SIBO. I was able to get in with a gynecologist that specializes in perimenopausal and menopausal women. And I was, you know, able to alleviate the symptoms that really had nothing to do with each other, but looked like they did to me on the surface. So that was a huge learning. I'm always used to like this has to do with a flare. I'm in a flare. Whatever symptom I'm having, it's because I'm in a flare. Right. And it wasn't. And I wasn't. And the relief that I could just have a two-week antibiotic and get put on HRT and be back to as normal as I probably will ever be. Yeah. Again, you know, it was revolutionary, but also it puts me, I'm not going to go on a wrap, you know, down soapbox, all that stuff. Alicia and I have been trying to get somebody on the show that specializes in female hormones and IBD or just hormones in general, because it affects men as well. But we found one study on PubMed about perimenopause, menopause, and IBD. And it one study. So the last five years. Done. Yes. One. So anyway, I'm just saying it needs to be done, much less like having to do with J Pouch. J Pouch, we have a lot of people that have J Pouches that have come on the show. We have attracted these people. We love them. They are my community. But also, it is rare to have a J Pouch. That is not a common thing. And so there isn't a lot of research into J pouches. And there isn't a lot of research into what should our stool be. And while there are guesstimates by people who treat people with J pouches, there is nothing definitive that has any kind of guidance for people living with J Pouches. I I guess I am kind of going on a little bit of a tad tangent. Yep. So that's not, it's not the first thing. So Alicia and I say on the show all the time, and our guests say it too like, you should get a second opinion. If you have a severe case of IBD and you're not getting the care that you need, you don't have to completely abandon your doctor, but you should get a second opinion. And that's what I was looking for when I thought I was going to leave my current GI team. I was going to go to someone that specializes in J Pouches. Because they're because they are very rare. There are something important. There are, but five classes. Yes. When I start when I switched to my doctor in Houston for my doctor in New Orleans, I needed somebody who only saw IBD. Yeah. Because I knew my IBD was way more complicated than a community GI could manage. And then I had to switch surgeons mid-surgery. And then I switched GIs because I needed somebody who understood my IBD, which is more upper. What is it called, Stacey? Just upper endoscopic chrome? No, it's like upper GI Chrome. Upper GIS. And so then now, like with now with this, I was like, okay, now shit, I'm gonna have to travel further. Because I have like a seven-hour trip right now, a seven-hour round trip to see my care team. But then I was like, okay, well, now I'm gonna have to go see somebody that really specializes in JPouch because I'm not getting answers for, you know, something's wrong and I'm not getting answers. You don't have to be as drastic as me. I still stayed with my care team. But also when my doctor finally, when I finally got to talk to my doctor again, she had reached out to one of the doctors that specializes in J Pouches and said, Hey, like I need a consult on this patient. Which I mean, I'm and she shared with me that she did that. And I was very grateful for that because the doctor that she was consulted with was somebody that I was gonna reach out to. So it is a wild ride. Like I feel like Crohn's took my 40s from me a little bit. So I was like, this is I can't let this take the next decade of my life. I can't, I can't let it do that.

SPEAKER_02 50:10

The sense of urgency was entirely different.

SPEAKER_00 50:12

Yes, yes, exactly. But like Stacey said, I'm not gonna let this stop me as much as I can. I'm not gonna let this stop me. So I have taken some amazing trips when I was well. And I have, I have a job where I travel a lot, which has to be taken into consideration and making sure that I am well and able to maintain my GI health as much as possible. At the five-year mark, I feel like I'm at the precipice of so many more good things. Yeah, it's easier to feel hopeful. For a while there, I was having scopes like every three months. And while that was for something different, it was dysplasia and that kind of thing. A scope is so traumatic to your body. And recovery from that is so traumatic to your body. And I will have a scope in September, and that will be a whole year between scopes. Previously, I would have been in a panic this entire year, wondering if something, if the dysplasia was coming back, if they're gonna go in there and it was gonna be cancer this time. And I'm actually, you know, halfway there and I'm not in a panic mode thinking about it. My chest is not getting tight right now thinking about it, because I'm hopeful that the person that did my scope, he's an endoscopic specialist and specializes in like surgical procedures in an endoscopy. So I feel like, okay, he knows what he's talking about and he went in there and saw it, and I can wait a whole year. But if you had told me that two years ago, that you wanted me to wait a year between scopes, I would have I did. I had a panic attack in the office and I was like, I don't feel comfortable with that. I don't feel comfortable waiting a whole year. Like I feel like if we go in, it's gonna be cancer.

SPEAKER_01 51:50

It's an important point they bring you up that you bring up is that even though you had found somebody that worked so, so well with you and that had set up care teams and was willing to do things like bring in the endoscopic person and do this stuff, it's that you didn't when push came to shove and you didn't feel like you were getting the attention or the answers, you still sought out a third opinion. You know, that sometimes you can't stop at the second opinion. Because I mean, we've said this before too.

SPEAKER_02 52:14

I mean, like you guys have both had multiple people that you've talked to for your inflammatory bowel disease, sometimes just because of geography, sometimes because of need. Right. But you know, you're both of you, your IBD has changed throughout these years. Yeah, and it's and so sometimes that means you're bringing in somebody who maybe was a great person for your IBD at the time, but it's not a J Couch person, or maybe it's a surgeon you started with, but that wasn't the right fit.

SPEAKER_01 52:38

Right. Yes. Just because you have the team doesn't mean it's the team you have to stay with for your life because you have this for life. That's right. I think that's something I've learned from this podcast, honestly. Like I've went to see, yeah, and truly truly, I went to see some specialists that have been on this podcast to get kind of like just second eyes on my J Couch, especially when I was like, what's going on? And they were able to kind of explain, like, you're kind of in this gray area, you know, maybe it's Crohn's or maybe it's not, but it's actually not clear on the endoscopes that you've had the biopsies, like it's not showing up as Crohn's. It doesn't look to the naked eye like Crohn's, but could it be Crohn's? Like, there's still so much more we need to explore about the J Pouch. So we're just gonna mark you as Crohn's because like vegetalists are crunzy. And so it's just like it's not always black and white, but hearing even that from like these brilliant brains of people who really devote their entire careers to looking at people's j pouches and ensuring that we get to live a large life without a large intestine has been really meaningful. And I wouldn't have known that their programs existed without this podcast, and I honestly wouldn't have even known how to navigate some of my own healthcare without Robin. Like there's so many times in my healthcare journey over the years, way before this podcast, that she was like, you have to, you know, move along. I understand you like this doctor, I understand you like them personally, but it is time, and that's been helpful. Well, Robin, I'm sorry that you're now the the navigator at the Sherpa of Healthcare. Sherpa of healthcare. I'm sorry that's the case, Robin. That should be. She's so good at Sherpa. Shouldn't be you do it so well, and that's but it's unfortunate that you have that. It's life-saving.

SPEAKER_02 54:12

I'm gonna back up because you said something that that triggered another conversation that we've been having, us, is that you you mentioned tired. Yes.

SPEAKER_01 54:21

And and there's a lot that we talked about here where like tired is lots of different things. Tired is not sleeping because you're up all night going to the bathroom because you have CB.

SPEAKER_02 54:30

Tired is also iron anemia. And so you guys have both talked about this, both of you. I and I have been anemic and I realize like it is a very different tired material. But sometimes it creeps up, right? Like it starts out just being like, oh, I'm just having been sleeping right or whatever.

SPEAKER_01 54:47

I've been traveling so much, whatever. It's my period. It's my period. But so, like, again, Stacey, I'm gonna have you put slightly put your your your professional hat on. As a dietitian and as somebody who is working with people that live with JPouches, what are some things like anemia that people should be sort of monitoring for? Yeah, it's a good question. Dehydration can show up in the form of fatigue. Something else is that eating enough cannot be understated. And it's really hard because Robin and I were talking about this earlier. Like nausea can kind of just be weird with a JPAC, but that in itself can make your JPouch function harder on you. And so a lot of it is just like, I'm going to do this out of self-care. I had a patient recently who was like, You want me to force feed myself? And I was like, you know, that's one reframe. I prefer eating out of self-care. But it's a nice way to eat that. But the reality is like, once you learn these patterns in your body, you begin to expect outcomes that you can kind of make informed decisions about, if that makes sense. So eating enough cannot be understated with a day patch. The number of people that I'm like, okay, girl, Meta Measle cracker is not a snack. That is not a snack. That's a cardboard piece. And that's that's nothing more than a vibe. And we're gonna have to get you a proper snack. And everyone likes a person who brings snacks. That's that's why I have so many good friends. At least put some cheese on that cracker. That's right. Peanut butter. Yeah. I don't know what it tastes like. Peanut butter? No, I know the medicine. I know what peanut buttes like, very much so. I know far too well. Like we're about to take a break, and that's just no, I know about it for the first time. Oh, that's good. That's good. Yeah, so eating enough cannot be understated. In addition, sleep is really, really hard with a J Pouch, so sleep hygiene is important. And I say that as someone who would much rather just like watch AD videos of people's homes on YouTube all night. But unfortunately, that's like not the life we've been given. We have to really be extra about our sleep hygiene. But anemia can form from a few different vitamin deficiencies. One is folate, that absorption happens much higher up in the GI track. So, like with Robin, honestly, you probably have to have more digunal crohnes to that. I'm not wishing on you to figure out. But with the the gastric Crohn's, like that B12 needs to bind to intrinsic factor, which really is dependent on your stomach pH being a certain level. And so if that's influenced by gastric Crohn's, then it's harder for that B12 to bind to that intrinsic factor. If it's not able to bind to that intrinsic factor, it won't be absorbed in your ilium.

SPEAKER_00 57:26

Everyone, she's talking to me right now. Yeah, I'm looking at straight to the right. She's looking in the eyeballs and talking straight to me because I, while I am not vitamin B12 anemic right now, I my levels are low. It's a little low.

SPEAKER_01 57:39

Even though you have like a shot.

SPEAKER_00 57:42

Yeah, I do a shot once a month and I take oral vitamin B12.

SPEAKER_01 57:45

My B12 is also suboptimal. We like to see it nice and high above 400 for so far below.

SPEAKER_00 57:52

But also iron. Also folate, B12, iron.

SPEAKER_01 57:56

Those are all your anemia related. Like if those are low, they're gonna make you feel a little sluggish. If all those are taken care of, and if my patients are eating all the food and if they're trying their very best to get good sleep, I'm like then we might actually explore also a B1 and just see what that level is. Again, it's important that we're not really guessing but we're testing these levels because we don't want to overprocess our diets with supplements. We need to be really judicious because the reality is we do need certain supplements with IVE, but process things are not something that we need to adhere to, even though they have the marketing and PR budget of like a Marvel character. I don't understand. I don't know. Well you've said in the past that food is best. So if you can get it from food, yeah, but that's difficult. It is for some can be challenging for certain aspects of the disease, depending on the

Surgery Is A Treatment Not A Cure

SPEAKER_01 58:50

location and the severity, depending on people's surgical history. There's a lot more that we need to explore with iron, but we do know that even if you do all the right things with IBD, I feel like IBD almost impacts a certain person because the there were times people are like, okay, but chocolate the best food. They're like, tell me exactly what I need to avoid anemia. It's like, oh, I wish I could. Yeah, they'd probably pay me a lot more if I could. Yeah, I don't have the Marvel character budget. That's right. But the reality is your body with IBD will just kind of use things more. So if your body is using more nutrition to heal from inflammation, it's gonna need more iron. And so does that mean you need to supplement blindly? Not necessarily, because we don't want to start causing micronutrient abnormalities with other competing micronutrients for absorption. But it does mean that we need to be monitored with this J Pouch, but no one really necessarily tells us. A lot of us feel orphaned after we have our J pouch. We're like, do we belong to surgery? Do we belong to medicine? The answer is we belong to GI for these micronutrients being monitored. At least we ideally should. How often should that happen? At least once annually after you get your J Pouch. Yeah, if you're in an active flare, probably twice. I think the other thing, I mean, and Robin has said this on the show multiple times, that her labs lie, you know, and so getting to understand what anemia looks like for you is important because you understand when you are starting to feel like you did when you did get officially diagnosed with anemia. Correct.

SPEAKER_00 1:00:21

And and that's also having an honest conversation with your doctor. Yeah. I mean, uh, for a long time, doctors looked at my labs and were like, you're great. And so what my body has a tendency to do is like fight like hell, fight like hell, look normal, look normal, look normal until everything just and then just falls off the cliff. Yes. I know what my body does when my iron starts going low. I know, and I have standing orders to get iron panel. So I mean, I don't abuse that. I'm not going once a month and getting an iron panel. But if things like my hair starts falling out more than usual and I start to crave ice and I am starting to have the fatigue uh that no amount of sleep will fix, and you start noticing the pale skin and darkness that I get very dark bags under my eyes. Yes. Oh yes, yes. So when I start seeing these things, because I have standing orders, I can just go to the lab that's closest to me, get lab work, and then send it to my doctor. Another thing that I do too, which is probably more annoying, is I don't have like an Excel spreadsheet or anything like that, but I have access to all of my past labs and I will compare. And if I'm on a downward trend, I'm gonna bring that to somebody's attention because I know that they're just looking at my most recent labs. And I'm gonna say, hey, I know this is still in normal range. And I'm using air quotes here because I hate that freaking term, because normal for who? I know that this is still in normal range. But if you look at the last three labs that I had done, I am trending down at a pretty good pace. And it looks like by the next time I will be way out of range. Right. Yeah. And you might as well get ahead of it.

SPEAKER_02 1:02:01

Yes.

SPEAKER_00 1:02:02

It's so hard to cut the back.

SPEAKER_02 1:02:03

Yes. Right. Why would you why wouldn't you?

SPEAKER_00 1:02:06

For me specifically, when I first started actually getting iron infusions, I was so low that I couldn't, I didn't even tell that I'd gotten an iron infusion. People are like, oh, I have so much energy after an iron infusion. Oh, I'm gonna feel that.

SPEAKER_01 1:02:18

Because I told you, I was like, Oh yeah, you're gonna feel so much better. You were literally like, I did not have energy.

SPEAKER_00 1:02:23

I did not I did not, it took many, many iron infusions for me to actually feel better. Wow. So I don't want to get to the point where I have to go and get an iron infusion and it doesn't even make a dent. It takes longer for my body to recover, build back, all of those things. It's so many more, so many more. Yeah.

SPEAKER_01 1:02:43

It's just important. It really highlights like just the importance of your inflammation being monitored. You're even if you are in 100% like remission, like knock on wood, all things. I am in surgical remission on Rinvoke, and Robin and I are still scheduled to get our iron infusions like basically at the same time next week. Yeah. So even though like I'm able to eat all these beautiful iron-rich foods, lots of lovely plants and combinations of colors in my diet, which is amazing. I'm still like gonna be a little bit iron deficient. And that's just the reality in my circumstance. I'm also like a menstruating person. And so that's another thing to consider. But you know, making sure that inflammation is attenuated and is being followed is most important when it comes to making sure that your energy levels are okay and you're getting adequate nutrition absorbed. Um, a lot of times with this disease, it will lie to you and say like you're not absorbing things because you're running to the bathroom six, seven, eight, you know, 20 times a day. But the reality is our bodies are actually a lot more resilient and absorption happens a lot higher up. So sometimes our bodies are still fighting on our behalf, even when it feels like it's against us. And it's just an important thing to kind of keep in the back of your mind on you know, if we're running day. Two last questions for you.

SPEAKER_02 1:03:54

First one is favorite things now that you're five years in, and this could be hacks that you learned, aspects of living with your J Pouch. Like, what's been your like top of the mountain? This is great.

SPEAKER_01 1:04:07

Skiing with a J Pouch is amazing. Just getting to be on a mountain all day and be like, oh yeah, you're hungry. Me too. Oh, you want to just like stop in and get a bite? Oh, no worries. I got like a pocket full of snacks, and just getting to live on a mountain with a J Pouch is crazy. It's crazy. Other favorite things, international travel, being on an airplane, getting to hike, getting to wait in line for various things without having a panic attack. I love every single time I get to take a cup of coffee on a walk. I'm like, oh, this is a flip. If I get to eat in the car, which I had a couple bites of chocolate on my way up here to meet you guys, I was like, magic. I'm in the mountains and I'm eating chocolate in my car, and I'm not gonna poop my pants.

SPEAKER_00 1:04:50

Long road trips. Amazing. I live in Florida and my family lives in Louisiana and six and a half, seven-hour road trip. And it's I have one stop where I stop and get gas and I go to the bathroom. And you know, sometimes I have to stop more, but usually it's just the one stop, and I don't have to worry about where I'm gonna stop and where there's gonna be a bathroom. And you're probably stopping for Marie more than you're stopping for. I even stopping for my baby puppy dog more than myself and international travel. I've only done international travel since getting my gym coach. So that has been pretty fantastic. Like last summer, Matt and I took our camper and started in southern Utah and went all the way through Utah and up into Wyoming and over to Idaho and then back towards Colorado. And I would have never taken that trip with him before the J Pouch. I would I would have never. And I feel like saying travel is kind of not everybody gets to do that, right? Absolutely.

SPEAKER_02 1:05:47

But even when Sixia is talking about going for a walk with a recipe, and you might need to worry about it.

SPEAKER_01 1:05:52

One spending to your difference, just having a meal with your friends. It's just little things, it is often the little things that are the big things.

SPEAKER_00 1:05:58

Yeah, yeah. We're just saying the big things. Because that's like that's such a like my mind is bone, but such my mind is bone, but yes, right. The little thing being able to take Marie on a walk, just walk away from the closest bathroom, and I'm not gonna be back near a bathroom for two whole miles. Yeah. Take Marie for a walk on the beach and stay there for two hours.

SPEAKER_01 1:06:18

Life changing. That's like I had a former patient turn friend who was asking me recently about J Pouch, just thinking about maybe pursuing that option at her own threshold of the possible surgery. And I was like, look, there's really no right answer. It's just what's most right for you. But she was specifically asking about like running and if I felt comfortable going on runs and things like that. I was like, oh, I don't think about my body on a run anymore. And I met Robin whenever we were running for a team challenge, and I was unbelievably ill, but yes, just normalizing it. And like we do, like we normalize everything. Yeah, I was like, oh, two hours in the bathroom before a race in New Orleans is fine. It's not fine. It's not fine. Oh, that's not fine. Yeah, I'll just run dehydrated. So anyway, I was like, no, I'm able to like run. My cousin and I plan to like hike a 14er this summer together.

SPEAKER_00 1:07:11

And like and I'm signing up for my first half marathon since the beginning of 2022, which I had no business.

SPEAKER_02 1:07:18

I was like, all of us were like, what?

SPEAKER_00 1:07:21

I had no business doing that. I talked about it on the show three, four years ago. I had no business doing that half marathon. I just want to let everyone know I do not recommend. Like Robin was going through some stuff. I had no it was no, you and I did not say a word to her.

SPEAKER_01 1:07:34

We're like, okay, okay, no business. Because listen, you you were having you were having that's what you needed in that moment. I did looking back, perhaps yes, not the best time.

SPEAKER_00 1:07:43

Yes, but you know what you needed that I needed to feel like I wasn't gonna die. Yep, exactly.

SPEAKER_01 1:07:47

I sometimes you gotta do that. Sometimes you just gotta so now now that's not why you're doing it. Now that's not why I'm doing it.

SPEAKER_02 1:07:53

Well, and we should put it out there that Robin is signing up to do a half marathon, and somehow I have agreed to do this with her. Yes. I don't know about this. I thought you were gonna join us. Yes. Were you not part of this? Yes, uh, wasn't part of this? Yes. I need to be. Listen, I need some sort of motivation to actually make me run. I don't want to run, I don't like it, but I will run if there's a threat of humiliation. And so that is what I need. And so, all right, yep, I love this.

SPEAKER_01 1:08:18

I it's so beautiful to hear how things have changed and made yay. But the one final that we're gonna talk about is as we mentioned, people who specialize in people who specialize in j pouches that are medical professionals are a bit like unicorns. And so chances are very good that everybody else that may be contemplating this or maybe introduced to this as a concept that would be helpful for their care are probably gonna be talking to people who are not those unicorns.

SPEAKER_02 1:08:45

So advice for medical professionals for as they're talking to people who perhaps this is a good option for them or this is an option for them.

SPEAKER_00 1:08:56

Send it to the surgeon early and often. Send somebody to a surgeon early. Yes. Okay. The the GI that you're speaking to, and they've presented this as an option for you. The first thing that you should be asking for is I need to talk to the surgeon. I need to know more about the surgeon. How many JPUB surgeries has this surgeon done? Like that is important to know. Yep. So the medical professional should probably say, I think this might be good.

SPEAKER_01 1:09:20

And these are the surgeons that I've worked with that I trust. Do you let me know who you might want to talk to first? Yes. Okay. Like that. Everyone should put their own like politics aside in that conversation. And if those surgeons are not at your institution, send them elsewhere.

SPEAKER_00 1:09:36

Yes, send them anyway, even if they're not in your institution. Like, please. Yeah.

SPEAKER_01 1:09:40

And actually be honest. Say this is a great surgeon. Would they be great for a J Couch? I think this person might be a better fit for you. That's a great conversation. Very helpful. Personality-wise, so just sometimes like you haven't seen the same doctor for a long time. Like your doctor Robin 100% knows you your personality to be able to go, maybe not that person. Like, I feel like I do feel like that's true. Or because of your how complicated, yeah, this person might not be the best for this. You know, I agree with you. Putting politics aside, putting

Fatigue Clues, Anemia, And Lab Trends

SPEAKER_01 1:10:10

opinions aside, and just sort of stepping back and saying what's going to be best for Robin, what's going to be best for Stacey, what's going to be best for Alicia as my individual patient living with you know this disease. Okay. All right. Next.

SPEAKER_00 1:10:22

I think an honest conversation about what to expect at three months, six months, nine months, twelve months, and not just like the patient experience, but what does care look like? Because Stacy mentioned this earlier this evening in our conversation. We feel orphaned afterwards. Who do we belong to? Do we belong to surgery? Do we belong to GI? And, you know, do we just everything's back to normal and you're supposed to just go back to your primary care and have your annual? So I feel like really talking about what does care post-surgery look like and who you're supposed to be seeing and what can be expected from that visit.

SPEAKER_02 1:10:55

I would add to this too, because you guys have talked about this, is that like that doesn't just end with your GI. No, no, because you have other people. I mean, we're women living in in female bodies, right?

SPEAKER_01 1:11:05

Like we're gonna have an obigun, we're gonna have a GP, we're gonna have a pulmonologist, whatever, whatever. Like, how does your JPAS impact these other aspects of your care?

SPEAKER_00 1:11:15

You didn't mention this, but I'm also gonna say I know that we don't have a lot of them, but a pelvic floor PT should 100% be a part of right away. I and I know it's not gonna be a pre-surgery thing because we're just not there yet, but it should 100% be a part of your post-surgery. If my mom had just had knee surgery and she's in physical therapy three times a week, when she had soldier surgery, she was in therapy three times a week. I just had my muscles and the area, my whole pelvic floor completely destroyed, not destroyed, but there's things happening down there that are gonna affect my pelvic floor, and pelvic floor PT should definitely be a part of that conversation.

SPEAKER_01 1:11:55

If you are told that you don't have aftercare, even if that's the answer that you want, it's incorrect and you should probably sprint away. Yes to the direction of safety. And if you need people to help you find whatever direction that might be, people of this podcast are really good at Sherpuffs in the healthcare space. And I think that reaching out to any one of us would be worth your time. Yes. And we know people, I mean, I really do believe between the three of us, we do have a very strong friendship network through the entire United States. Yes, through the entire United States, yes. We can I feel like we are well on our way to curing IVD with just us being in the same room. I mean, at this point, really. Yeah.

SPEAKER_00 1:12:40

The loop iliostomy is brutal, brutal. I have had an end iliostomy and I have had a loop, and the loop was a completely different experience. And the rogue water hose. It it really is. And it's very hard to get your appliances to stay. They it's it's really hard to get to not have leaks. And you're you won't have the loop for long. You I had it for six months, but that's because I've changed surgeons mid-stream and ended up having to have it for longer. Right. But you should only have it for about six weeks, eight weeks, tops, because your surgeries should be about three months, one surgery, and then six weeks and one surgery, and then six weeks and one surgery. So about average. That's what they planned for. It it was very hard for me to get my appliance to stick. There was a lot of leaks. Yeah. I mean, I finally got the hang of it probably four months in, but it just was a completely different experience from the end.

SPEAKER_01 1:13:33

Yeah, it's kind of a learning curve. Yeah. Like to me, if you're willing to live a good full life and be open-minded to like, what do I need to do and make this happen with IBD? And then you're like able to mentally pivot. And if you're not, you're meeting with a GI psychologist or you're meeting with a therapist. Yeah. And obviously, like if you're paying attention to the things we're saying, like this is an expensive disease that does not only impact the privileged, unfortunately. And we need much better access to healthcare. And I'll never stop seeing that from the rooftops. And we're doing, you know, all we can, but oh, so there's just like learning curves in between, and you're gonna have to learn how to like, you know, the end to the loop and then learn how to eat. I remember asking a dietitian in the middle of my surgeries. I was like, so I do have to learn how to re-eat, like every time an ostomy starts over, and her response was you shouldn't. And I was like, Well, that does not instill a lot of faith given that I had two obstructions because someone also told me I could eat whatever I wanted immediately after surgery. And your girl's a dietitian, I'm gonna go straight to the beans and the mushrooms. Changing your anatomy drastically every time, even if it doesn't feel drastic for the surgeon, it's drastic for you. You are having to learn in between your surgeries, new anatomy.

SPEAKER_00 1:14:46

Yeah, I actually have said this multiple times. I think I've even said it on the show a couple of times. I have had to potty train three times in my life. You have to relearn how to do that. And I wish more physicians and surgeons were able to communicate and articulate that to patients because here's something for you, GIs, and also surgeons. Like Stacey just said, while this is a simple procedure for you, or you're like, you're gonna be fine afterwards. You're basically lying to your patients because it's just not it's such a blase thing to say. Yeah, it's not an accurate assessment of what the life is life is gonna be like. No, unless they have one. Right.

SPEAKER_01 1:15:27

You should just say, you know, I don't know. What I've heard from patients is yes, yeah, yes, and that's another thing is like for GIs or whoever might be listening who sees patients ask a ton of questions of your patients with J Cauches. Ask so many questions, they're the experts, and you have so much to learn. Also, do refer to dietitians and also know that like we just got approved for a GI RD credential in October. So now when you recruit dietitians to your private practice or to your institution, you can see if they have a comma CSDH. It says we're certified specialists in digestive health. That means that they have at least 2,000 hours specialized and dedicated specifically to people in GI diseases, and they have at least a demonstrated objective interest in it. So that's a really important thing to kind of look out for if you're making a hire. Another thing to look out for is any dietitian who wants to have any sort of interest in IBD and just send it my way because I have a ton of resources and I'm happy to help them feel confident and helping patients. We, as dietitians, can really make a profound impact on people's quality of life in the mid, in the before surgery, and very much so after surgery and helping you live very large without a large intestine. And it's super fun.

SPEAKER_00 1:16:45

I have to like second that because, like I said at the beginning, I was very grateful to have Stacy just a text away from me. And like having somebody

Better J-Pouch Care And Closing

SPEAKER_00 1:16:55

that knows about IBD and surgery specifically was very beneficial to me.

SPEAKER_01 1:17:00

Yeah, which it's fortunate that we do have dietitians that are outside of some of the systems that do do private practice. If there isn't one within the system, there is still somebody available.

SPEAKER_00 1:17:10

There are, yeah, there are there's a good number of virtual private practice dietitians.

SPEAKER_01 1:17:14

Speaking of that, like if you want to go on my website and join my wait list, and I'm I'm so so sorry. I do work at a university hospital and I cannot see more patients in my private practice now. However, you will automatically get redirected to dietitians that I sincerely would see as a patient myself, who you can see virtually anywhere in the US. And you'll also get a list of patients or of dietitians who specialize in IVD at various centers throughout the US that you may not even be aware of that are actually employed at the practice that you're at. Okay, guys, thank you so much. It's been really fabulous because you guys said, you know, Stacey, you're uh obviously a frequent guest on the show just because we love you. I love you too. And so it's so fun to actually get to do this in person. Thank you again so much for sharing your lives so openly on the show. Thank you everybody else for listening. Cheers. Cheers, everybody. Like and subscribe.

SPEAKER_00 1:18:03

Hi, this is Robin. And if you like this episode, please rate, review, subscribe, share with a friend. Let somebody know so they can listen to it too.

SPEAKER_01 1:18:12

Send it to your in laws if they think you just had a simple appendectomy.